Author: Chris Sanchez

Categories
Chemotherapy Colorectal fertility preservation Immunotherapy Liver Resection Metastatic Monoclonal antibody drug Ostomy Patient Stories Surgery Targeted Therapy Treatments Tumor excision

Life Changed Overnight: Rylie’s Experience with Stage 4 Colorectal Cancer

Rylie T. colon cancer

Life Changed Overnight: Rylie’s Experience with Stage 4 Colorectal Cancer

Rylie is someone whose life has always revolved around her family, home projects, and being outdoors. She enjoys gardening with her mom, cycling with her fiancé, and caring for her chickens and dogs. In April 2025, the joys of that routine were interrupted when persistent abdominal pain and bloating kept sending her back to the ER, where she was told it was constipation. Trusting her intuition and refusing to ignore what her body was telling her, she pushed for answers. That persistence led to the discovery of a mass and a diagnosis of stage 4 colorectal cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez & Jeff Forslund

Rylie had to have emergency surgery. Her surgical treatment was extensive, involving the removal of a tumor in her colon, a liver mass, and parts of her small intestine. She also received an ostomy, which she had reversed.

Rylie T. colon cancer

Her cancer treatment involved chemotherapy, immunotherapy, and targeted therapy, but not before Rylie underwent fertility preservation, a major decision made quickly after surgery. Her care team involved multiple institutions, and she and her family sought out the best specialists for her treatment.

Throughout her experience, Rylie relied deeply on her faith and the support of her family, especially her mother, who she describes as her role model. She openly shares the emotional challenges of postponing her wedding plans and adjusting to physical changes, but remains grateful for the unwavering support of her fiancé and family. 

Rylie encourages patients to advocate for themselves and stresses how important it is to connect with others facing similar diagnoses. Her experience exemplifies the importance of self-advocacy and persistence when navigating symptoms that don’t fit typical expectations.

Rylie’s story is a testament to transformation, from shock and fear after diagnosis to hope and empowerment with treatment and community support. Her experience offers vital lessons for young adults and others about listening to their bodies, seeking quality care, and approaching cancer treatment with resilience and faith.

Watch Rylie’s video above and read through her edited transcript below to learn more about how:
  • Early symptoms may be misunderstood or misdiagnosed; trusting your own body and seeking persistent evaluation is crucial
  • Cancer treatment affects every part of life, including the physical, emotional, and relational parts, and requires strong support systems
  • Fertility preservation is an important consideration, even amid urgent cancer treatment
  • Seeking second opinions and specialized care can significantly improve treatment experience and outcomes
  • You know your body best. Advocate for yourself, no matter what
  • Name: Rylie T.
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 4
  • Age at Diagnosis:
    • 27
  • Symptoms:
    • Sharp lower abdominal pain
    • Severe bloating
    • Fecal impaction
  • Treatments:
    • Surgeries: colon, liver, and small intestine tumor resection; ostomy surgery; ostomy reversal surgery
    • Chemotherapy
    • Immunotherapy
    • Targeted therapy: monoclonal antibody
    • Fertility conservation treatments
Rylie T. colon cancer
Rylie T. colon cancer
Rylie T. colon cancer
Rylie T. colon cancer
Rylie T. colon cancer
Rylie T. colon cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Rylie’s Interview
  1. My name is Rylie
  2. How we navigate cancer as young adults and a couple
  3. My first symptoms: when things felt off
  4. Advocating for myself and the challenge of getting diagnosed
  5. My reaction to my stage 4 colon cancer diagnosis
  6. I had emergency surgery
  7. Living with an ostomy
  8. Finding the right care team
  9. What my treatment has looked like
  10. My treatments, including fertility treatment, and their side effects
  11. Scans, communication, and no evidence of disease
  12. Hope and faith through cancer
  13. Support from the colorectal cancer community
  14. What I want others to know

My name is Rylie

My name is Rylie. I was diagnosed with stage 4 colon cancer in April 2025.

Family is my main priority. I love being with my family and spending time with them. 

I got engaged two years ago. We were supposed to have our wedding in June, but that was derailed. We’re now planning for this next June. 

My fiancé is my best friend. We love doing house projects together. We have chickens and two dogs. I enjoy working in the garden. I also like road cycling and am just an outdoorsy person, so I love being outside.

I wouldn’t have been able to get through this without my mom or my dad. They’re my number one supporters and have been with me every step of the way. My mom is my role model. She loves the outdoors and flowers. I try to mimic what she does, but I’m the little version of her.

How we navigate cancer as young adults and a couple

It’s been tough. It was a life-changing experience for both of us. 

We used to be active every single day, but with me in the hospital for ten days at a time, my fiancé has had to support me and put house projects on hold. Pushing the wedding back was sad because we put so much work into planning, and we thought 2025 would be the happiest year of our lives, but it ended up being the worst. 

Still, it’s awesome that he stuck by my side through it all. Our lives have completely changed, but we are committed to each other, and that will never change. My body completely changed, and he still loves me for who I am, and I’m so grateful for that.

After our wedding, I thought we’d have a child right away. Being a mom is all I want in life. We’ll eventually get there. Luckily, I had fertility treatments and got my eggs frozen.

My first symptoms: when things felt off

It all started in October 2024. I went to the emergency room with severe lower left abdominal pain and bloating; something just didn’t feel right. The ER staff said I was backed up and sent me home. I accepted that explanation for a while. Six months later, the pain got worse. Over three to four ER visits, I was eventually admitted.

Before the final ER visit, I saw my family doctor because I had a fever for a week and felt unwell at work. She did a check-up, but said I was just backed up. That weekend, I went to the ER three times. Two of those times, I was sent home with pills, but the third time, they kept me, saying I might have a small perforation in my bowel. I stayed for seven days and couldn’t eat or drink. When my belly went down a little, they hoped the perforation would heal on its own and sent me home. 

That Sunday night, I told my fiancé something was very wrong, and he rushed me to the ER. That CT scan was totally different and showed a mass in my bowel and a mass on my liver. They rushed me into emergency surgery that night. Everything happened so fast; I had zero time to process anything.

The main symptoms were sharp pain in my lower left abdomen, severe bloating, and being backed up. I struggled to go to the bathroom, and even when I could, it wasn’t much. Those symptoms just continued to worsen.

Advocating for myself and the challenge of getting diagnosed

It was crazy… You know your body best. Doctors can run scans and tell you things, but only you know how you’re actually feeling. 

I knew something was wrong. Being sent home with a diagnosis of constipation was embarrassing. I was raised with two brothers; I was built to be tough. Still, it was demoralizing.

I had several CT scans. The doctor said that it’s actually easier to read CT scans for a heavier person because their intestines are more spread out, but I have a smaller frame, so everything is squished together. All the scans showed I was backed up, but they couldn’t see underneath the congestion.

My reaction to my stage 4 colon cancer diagnosis

Originally, when they performed a biopsy on my liver after seeing a mass, it came back as scar tissue. One doctor said, “If there’s a mass on the liver, it’s stage 4 colon cancer.” He called it from the start. 

The biopsy showed scar tissue, which was strange. They suspect it was a false negative, or it may have been a different mass. Other than that, no one mentioned “cancer” until a few days later, after more tests.

I was in complete shock. I asked doctors not to share results until my parents were with me. When he said stage 4 colon cancer, the first thing I thought was, “I’m going to die.” Everyone was in shock.

I had emergency surgery

For the emergency surgery, they sliced me from my sternum down to my pelvic area. They took out the tumor on my colon and removed a mass from my liver and parts of my small intestine. They also gave me an ostomy, which was a huge life change. It’s something I’ll never fully get used to.

I still have my ostomy, but am having it reversed on November 18th. I cannot wait to have my body back.

Living with an ostomy

It’s wild to see something on my stomach and learn that it’s my bowel. I’m grateful because it saved my life, but I don’t like it and hate it. 

I feel bad saying that because it did save my life. I had a great nurse who taught me how to take care of it. I couldn’t wear the same clothes; I had to wear baggier clothes to hide it. I’m very self-conscious, so it was hard not being proud of it, but I got semi-used to it and am happy I’ll get a reversal soon.

A doctor was honest with me and said some people never get used to an ostomy. For some, it’s okay, but it’s not my lifestyle. I’m thankful for honesty.

Finding the right care team

My surgeon was amazing, and the nurses at UPMC West Shore were great. We met an oncologist there, but we wanted the best care possible, regardless of cost. We contacted several cancer centers, and Memorial Sloan-Kettering resonated most; they’re in the top two in the nation. 

Their team was easy to reach and supportive, unlike the original oncologist team, which lacked good bedside manner. Bedside manner is critical, as I want to feel cared for.

Don’t be afraid to reach out to multiple cancer centers and get a second opinion. Memorial Sloan-Kettering was our first choice because of its track record. Doing this research is a lot of work, and my family was an incredible support team. I couldn’t have done it without them.

Traveling to Memorial Sloan-Kettering takes 2.5 hours; I’d go every other week for infusions. It’s a whole day affair. It’s worth it, and not too bad.

What my treatment has looked like

My treatment included chemotherapy and targeted therapy with panitumumab. Memorial Sloan-Kettering called it immunotherapy, but technically it was targeted therapy. 

The targeted therapy changed my cells to kill bad cells. I received chemotherapy every other week. I just finished my last pump today.

For each cycle, I’d have an infusion for about 2.5 hours, then go home with a pump for two days.

My treatments, including fertility treatment, and their side effects

The beginning was rough because after surgery, I immediately started physically overwhelming fertility treatments, four shots a day and no time to heal. 

Two days after surgery, the team asked if I wanted to preserve my eggs. I had zero time to process what that meant. After hospitals explained it, I started shots for fertility treatments right after discharge, four shots a day for two weeks. The extraction yielded 40 eggs, with 36 viable. It was rough but worth it.

And then after egg extraction (Monday), I started chemotherapy (Wednesday). My body was still in recovery mode, and the first infusion landed me in the hospital because it caused severe pain. My ovaries were enlarged, causing pressure on my urinary tract, and a mass was pulled out, which was benign. 

The first two treatments were rough due to back-up and pain, but after that, the treatment went well. I had some tiredness and a facial rash, but it was manageable overall.

Scans, communication, and no evidence of disease

Two weeks ago, we were in a different emotional space due to miscommunication between surgery and cancer treatment. I had a scan, and the oncologist said the masses on my ovaries were shrinking. That was news to us. 

After investigating, we learned these were cysts from fertility treatments, not cancer. 

After an MRI and a CT scan, the team scheduled liver resection and ostomy reversal, and afterward, I’ll be in remission. 

Hope and faith through cancer

I leaned heavily into my faith this year. God is the one who got me through this. He tested my strength but rewarded me in the end. 

Without faith and my parents, I couldn’t have made it. 

I try not to use the word “hope.” I want to be positive and manifest certainty that this isn’t coming back.

Support from the colorectal cancer community

It was hard to accept having cancer or an ostomy, so I avoided reaching out or telling people. 

My mom sent me an article about a young woman going through the same thing: stage 3 colorectal cancer, has an ostomy, and runs marathons. I reached out. We quickly became best friends. 

It made a huge difference to have someone who understands. I can always talk to my parents, but only she truly gets it.

What I want others to know

At first, I didn’t want to relive my journey, but I realized how important it is for young people to hear this. Colorectal cancer is often seen as an older person’s disease, but young people should still advocate for themselves. 

I never would have been given a colonoscopy at 27, but if you have concerning symptoms, pay for the colonoscopy. It’s your life. 

Lastly, you know your body best. Always advocate for yourself, no matter what.

Rylie T. colon cancer
Thank you for sharing your story, Rylie!

Inspired by Rylie's story?

Share your story, too!

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Kasey S., Colon Cancer, Stage 4



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Categories
Chemotherapy Chemotherapy port installation Pancreatic Cancer Patient Stories Surgery Treatments

Learning What I Can Control as a Control Freak: Kim’s Pancreatic Cancer

Kim B. pancreatic cancer

Learning What I Can Control as a Control Freak: Kim’s Pancreatic Cancer

Kim was fully immersed in family life and in the work she loved as a special education teacher and therapeutic riding instructor when subtle changes in her health began to surface. Abdominal pain, bathroom changes, and a sudden 30-pound weight loss appeared in late 2024. Believing they were related to old ulcer issues, she tried to push through. When the pain became too intense, an ER visit finally revealed something far more serious. Imaging showed a mass in her pancreas, and follow-up tests confirmed it was pancreatic cancer.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Throughout the shock and grief, Kim’s response to her pancreatic cancer diagnosis was shaped by faith, resilience, and a proactive mindset. Treatment began swiftly. Her oncologist recommended an aggressive chemotherapy regimen starting in June 2025, after installing a port for the infusions. 

Kim B. pancreatic cancer

Chemo impacted Kim significantly. She experienced side effects ranging from stomach problems and severe diarrhea to cold sensitivity and platelet fluctuations. Her medical team offered tips to help her manage the symptoms and side effects, like using Imodium or adjusting dietary choices. Emotional support was equally crucial, with family and friends providing strength, especially during the loss of her father shortly after starting chemo.

Kim’s greatest challenge was relinquishing her sense of control and leaning into acceptance. She found joy even in adversity, actively choosing to participate in life and encouraging others to do the same. Kim’s hope has grown as her tumor marker, CA19-9, has dropped from 359.6 to 17. While her tumor is not yet operable, continued therapy aims to shrink it enough for surgical intervention.

Through faith and a community of support, Kim B. continues her pancreatic cancer experience. She says, “Perspective is everything,” and urges other patients to realize that every moment is worth the effort to live and improve, and to look for and focus on what brings joy. 

Watch Kim’s video to learn how:

  • The right mindset can make a crucial difference when facing a pancreatic cancer diagnosis
  • Support from family, medical teams, and faith is vital in navigating cancer and treatment side effects
  • Accepting loss of control and finding intentional joy, rather than fleeting happiness, is essential during illness
  • Every patient’s path is different; there’s no single way to handle cancer; solutions are personal
  • This key truth can help cancer patients: “You don’t have the luxury of being defeated; many people are counting on you to persist and find hope.”
  • Name: Kim B.
  • Diagnosis:
    • Pancreatic Cancer
  • Age at Diagnosis:
    • 58
  • Symptoms:
    • Persistent stomach pain
    • Abnormal bathroom habits
    • Loss of over 30 lbs over a few months
  • Treatments:
    • Surgery: installation of chemotherapy port
    • Chemotherapy
Kim B. pancreatic cancer
Kim B. pancreatic cancer
Kim B. pancreatic cancer
Kim B. pancreatic cancer
Kim B. pancreatic cancer
Kim B. pancreatic cancer
Kim B. pancreatic cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Kim’s Interview
  1. My name is Kim
  2. When I first noticed something was wrong
  3. What happened next
  4. The moment everything changed
  5. My treatment plan
  6. How I’m navigating the side effects of treatment
  7. I hope surgery will be an option
  8. The biggest challenge of my diagnosis
  9. Dealing with my father’s passing in the middle of cancer treatment
  10. What I want others to know

My name is Kim

I was diagnosed on May 27th, 2025, with pancreatic cancer. I live in Florida.

I am a special education teacher, though not currently. However, I am fighting a different battle at this moment.

I am also a therapeutic riding instructor. I teach individuals with special needs, whether cognitive or physical, how to ride horses, and I absolutely love it.

I would take an arena over a classroom any day for all that it offers. It is a level playing field, and it does not matter how many years it takes a skill to develop. In general education, kids might learn it in a week; individuals with special needs might take six months, but it is just as victorious. That is a big passion of mine.

I love to encourage as best I can, and that is what I have done with this whole opportunity of having cancer. I have just taken it and tried to encourage others, no matter what they are facing. It is your mindset that is going to make the difference.

When I first noticed something was wrong

I started to have pain right next to my belly button, and I thought, “It has got to be an ulcer again,” because I have had them before. Between taking the grandkids to school, bringing them home after school, helping my daughter with various things, keeping up with Craig and his diabetes and insulin… life just keeps going. As the mom, wife, and grandparent, you push yourself. You think, “It will be fine. I’ll just take whatever we have in the medicine chest.” 

So it just kept going. The pain just kept going. Of course, I kept saying, “Well, I’ll just do this, or I’ll do that, or I’ll stop eating this, or I’ll start eating that.” Nothing remotely cancer-related entered my mind.

As a side note, I lost 30 pounds with no explanation from about September to December. That plays a part in this as well.

Eventually, on May 14th, after being at my dad’s house (he had broken his hip in March and came out of rehab on the weekend of Mother’s Day), I was helping him and his wife settle in. But my stomach felt off. Everything, including my bathroom habits, changed, and I wondered what the heck was going on. During my weight loss, I said to my mom, “I do not think this is right,” because I was not doing anything out of the ordinary. I was not going to the gym. I changed how I ate, but not enough to lose 30 pounds like it was nothing. I had quit drinking on July 10th, 2024. I just woke up one day and knew I was done; I could not feel that way any longer. I believe fully that was a still, small voice preparing me for what was coming, because this was coming regardless. Quitting drinking at that time helped a lot, because there’s no telling where I would be if I had continued.

I finally came home from my dad’s on May 14th, a Wednesday, it was late, probably about 10:45 p.m. I could not get comfortable, and the pain was near where I think my appendix is. I am not medical; ask me a special ed question, and I am all about it, but medically, I am not the person to ask. I said, “I need to go to the ER.” After nearly 34 years of marriage, of course, we argued about my going. Eventually, my husband drove me to the ER.

They gave me pain medication, and I explained what was going on. Everyone thought it was my appendix, even the doctor. I was not allowed even ice chips because they thought surgery was likely. They did a CT scan, and when the doctor came in to discharge me, she got a chair. I thought, “Oh, please don’t get a chair. That’s not good.” She not only got a chair, she leaned on the bed. I immediately felt uneasy. Then she said, “Your appendix is fine, but we saw a mass on your pancreas.”

I sat for a brief moment. A single tear went down my left cheek; I can feel it even now. I looked at my husband and said, “Alright, what do we do? What’s next?” That was the day I heard the words “mass” and “pancreas” in the same sentence.

What happened next

The day after I was at the ER, I called my primary doctor, who I was not supposed to see until July (just as a new patient for prescription refills and routine things). I spoke to the person answering the phone and explained, “Here’s the deal: I am not due to see the doctor until July, I’m a new patient, but let me tell you what happened last night.” She typed everything in as I told her. A couple of hours later, I received a call from the office asking if I could be there on May 21st. I said, “Absolutely.”

When we went in, the very kind doctor asked what brought me in. I said, “There’s a mass on my pancreas. Honestly, I’m just supposed to be a new patient.” I added, “This is not supposed to be part of the plan.” He replied, “The first thing we’re going to do is order a CA19-9 cancer blood test.” I agreed.

The blood test was done, and everything started moving very quickly. He ordered both a CEA and a CA19-9 test. My CEA result was just about normal, which seemed like good news. The purpose, though, was to determine if cancer was present. Hours later, I received results for the CA19-9; the normal range is 34 or lower. Mine was 359.6. Now we knew cancer was present.

Before I left the doctor’s office on the afternoon of the 21st, he said, “I’m going to have you see an oncologist. Walk up to the front with me; we’re doing a STAT referral.” I said, “Okay.”

During this time, I noticed myself leaning over a lot, putting my hands on my knees. It turns out that was because of the location of my tumor. It was on the superior mesenteric artery, which sits behind the pancreas and supplies the small intestine. I only found this out after a PET scan the surgeon ordered, which clarified everything. The PET scan completely cleared things up for me; now I understood this could really be a big deal.

The moment everything changed

When the doctor was standing at the foot of my bed, I asked him, “Is it cancer?” He answered, “Yes.” My husband was sitting to my right, and I was lying in the bed. I never in a million years thought I would hear the words: “It is cancer.” And it was my cancer. I had never given my pancreas a second thought. In fact, my husband’s pancreas does not even work, and that was the only introduction I ever had to that organ. He is insulin-dependent and deals with everything that comes with that diagnosis.

Before this happened, I went through a period when I learned the difference between gratitude and pride. I used to say, “Oh, I’m so grateful. All I take is a thyroid pill and a water pill.” But that wasn’t gratitude; it was pride. I looked at the handful of medications my husband would take, morning and afternoon, and thought I was fortunate. Then, I heard, “You have cancer.” Honestly, my first response was, “Buckle down. Okay, God. This is uncharted territory. I am going on blind faith. Let’s do it. Whatever comes, I am going to trust it is put in place by You, and that is the route I take.” 

I have not looked back. I have never asked, “Why me?” I had only one defeated moment throughout this entire journey I have been on.

My treatment plan

On May 29th, when I sat with my oncologist and he was explaining the plan, he said, “You will start on June 10th. Every other Tuesday after that, you will have chemotherapy, and it is going to be rough. Then you will take home a pump.” I could not wrap my mind around what he meant. “What do you mean, a pump? How does that work? What does it look like?” I found out soon enough that the pump was a shadow I would have with me for 46 hours after treatment. You have to navigate it; you cannot shower with it, but we figured out how to make the tub work.

I sat and listened to my oncologist, who has lots of initials after his name. I realized I was in no position to take over my care. Doing so would have been the biggest mistake I could make. For me, I was in completely uncharted territory; I knew I was in God’s hands. All I could do was trust Him to put the right people in place throughout my treatment plan. 

My medical team, I believe, has been handpicked; they have been amazing. I walk into the treatment room, and they tell me where to sit. I sit, they access the port, and I spray it with a ton of lidocaine beforehand because it hurts if you do not.

How I’m navigating the side effects of treatment

The first round of chemotherapy was rough, but I fully believe it was because of everything else I had in my system. I have not thrown up once, and I have mastered how to navigate stomach issues. My medical team told me I could take up to eight Imodium a day; it makes all the difference. It helps me feel much more in control, because when you aren’t, you know it, and it is humbling.

Dealing with stomach issues, there is no way around it. When I heard that eight Imodium a day was allowed due to the diarrhea, I realized I was not alone in this challenge. There was also a cold sensitivity. After treatment, I keep winter gloves by the fridge for when I need to grab something cold.

You simply figure out what works for you. People support and surround you, constantly asking what you need, but honestly, I do not know what I need until the moment arrives. If I feel well enough to do something myself, I do it, because it feels normal. Last week, I said to my husband, “I feel like a science experiment.” Between the head, the pump, and everything else, sometimes you feel like a transformer hooked up to a power station.

Whenever my blood work shows something is low, I research what food I should eat or what I should drink. Pomegranate juice, for the record, is disgusting. Fruit, vegetables, and protein are extremely important right now. I can’t stand the thought of red meat, so I avoid it entirely. If even the thought of something makes my symptoms worse, I do not push it; someday, I might want it again.

Of all the side effects, diarrhea is the worst. There were days—total transparency—when I made it to the tub, started the water, and just let things happen, because nothing else could be done. Sometimes your mind wants one thing, but your body insists on something else.

You adjust, and at some point accept, “This is my life right now.” In this life, there will be trouble. How you handle it matters; it is just a hiccup. These moments of making a mess, of not being able to eat, of being unable to go out, shop, or attend church… the risk is simply too great. Mindset, I cannot tell you, makes all the difference.

I hope surgery will be an option

Recently, I discovered that after a PET scan, my tumor is no longer malignant. However, it is still not small enough to be taken out surgically. Treatment continues in hopes that it will shrink to a size where my surgeon can simply go in and scoop it out, like using a Baskin-Robbins scoop. That is the goal.

I have had seven rounds of chemotherapy. I started in May with a CA19-9 level of 359.6. In July, my level was 17, which is in the normal range. Because of where the tumor is, it could return at any moment. What I have learned is that the tumor is no longer malignant and has been fragmented, much like the asteroids in that old video game where you shoot lasers at flying objects. There is a piece of the tumor lying on the superior mesenteric artery, with other pieces scattered, but nothing is active. My PET scan showed nothing glowing, which I imagine as a fluorescent orange vest, so nothing lit up.

However, stopping treatment now would be a mistake; malignancy could return at any moment. Until my surgeon tells me the tumor is small enough to remove, I will keep going.

The biggest challenge of my diagnosis

The biggest challenges for me have been coming to terms with how much of a control freak I was, how much I needed to be involved, and how much I thought I could do things better. All of that was taken away.

My daughter, who lives down the street, found herself at the receiving end of my constant offers to help: “Well, I’ll do this, I’ll take the kids, I can do that, I can do the other.” The same was true for my husband; I had everyone’s life, even the grandkids’ retirement, all planned out. It was ridiculous.

Apparently, smaller lessons in my life had not taught me that I am not in control. This diagnosis did. I embraced that reality. I have never complained that I have cancer or asked, “Why me?” because those questions do not help; they cannot make it go away.

Mentally, I have created videos to keep people updated, and I make sure to laugh in each one. You have to laugh. Laughter releases whatever is going on. I choose joy every day.

Dealing with my father’s passing in the middle of cancer treatment

On March 12th, I got the call that my father had broken his hip. The challenges of his hospitalization and rehab were immense, especially as he expressed his desire to stop treatment and go meet Jesus.   

His passing occurred three days after my first chemotherapy session, making it difficult to be present due to my side effects and immune suppression.   

My family organized a meaningful graveside funeral, honoring him with cherished keepsakes. 

What I want others to know

If I could leave you with one thing, it would be: Go outside as much as you can. Go see the ocean, a lake, watch the sky, notice the colors change. Watching these things reminds you that there are things much bigger than what we are going through.

Perspective is everything. In this great scheme of life, this is just something I have, but I also know I am going to get through it. How I will get through it is not yet written.

I encourage everyone to go see anything big, listen to music, all your favorite tunes. I have even looked up dance lessons on YouTube for movement and activity. I tried line dancing, since when I was a teacher, we would do the Cupid Shuffle with the kids; it teaches left and right, counting, and following directions. We did all kinds of dances like that. Yoga is also possible, even while watching TV. There are so many things you can do.

Just because you have the “C word” in your body does not mean any certificate has been signed. Every moment is worth living, worth making yourself better; physically, spiritually, mentally, emotionally. Do not sell yourself short.

Kim B. pancreatic cancer
Thank you for sharing your story, Kim!

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Share your story, too!

More Pancreatic Cancer Stories


Roger R., Pancreatic Cancer, Stage 2



Symptom: None

Treatments: 5FU (folfirinox), Gemzar, NK cell expansion therapy, Dendritic cell expansion therapy, Neoantigen peptide vaccine
Matthew R. feature profile

Matthew R., Pancreatic Cancer, Stage 4



Symptoms: Dark urine, bone white stool, itching on palms and soles
Treatments: Chemotherapy, surgery

Chris P., Pancreatic Cancer, Stage 4



Symptoms: Significant weight loss, stomach and digestive problems

Treatment: Chemotherapy

Jessica B., Pancreatic Cancer, Stage 1B



Symptoms: Upper abdominal pain, nausea, vomiting

Treatment: Surgery (Pancreaticoduodenectomy or Whipple procedure)
Elise T. stage 4 pancreatic cancer

Elise T., Pancreatic Cancer, Stage 4



Symptoms: Severe and persistent back and stomach pain, weight loss, indigestion

Treatments: Chemotherapy, surgery (irreversible electroporation), radiation therapy

Categories
Breast Cancer Cancers CDK4/6 inhibitor Chemotherapy Hormone blockers Hormone Therapies Mastectomy Metastatic Metastatic Patient Stories Radiation Therapy Surgery Targeted Therapy Treatments Triple Positive

Live with Hope for Yourself: Deb’s Multiple Breast Cancer Diagnoses

Deb O. breast cancer

Live with Hope for Yourself: Deb’s Multiple Breast Cancer Diagnoses

Deb has lived with metastatic breast cancer for seven years, originally diagnosed stage 4 triple-positive breast cancer in 2018 while raising her young daughter. Five years later, in 2023, she discovered a new lump and learned she had developed a second, unrelated breast cancer that was early stage and had a different profile.

Her life today is a blend of motherhood, advocacy, and strength. A longtime activist and English–Spanish interpreter, Deb has used her voice to push for understanding, empathy, and better support for people living with breast cancer. What began as two life-altering diagnoses has become a commitment to helping others feel seen, supported, and less alone.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Deb’s story began in 2016, when she found a lump while she was breastfeeding her daughter, but it was dismissed as a clogged milk duct. Two years later, the lump had not only persisted but had also grown, leading to a de novo metastatic breast cancer diagnosis. The “de novo” distinction means the initial diagnosis was already at stage 4 or metastatic. “I didn’t know what metastatic meant,” Deb recalls. Once biomarker testing was complete, she learned it was HER2-positive, hormone receptor-positive breast cancer, or “triple positive breast cancer.” The early months were filled with fear, tests, and treatments, but also immense love from her community, who helped her care for her young daughter. When she reached no evidence of disease in 2018, her optimism clashed with the reality that metastatic breast cancer is often managed, not cured.

Deb O. breast cancer

Living with both bipolar disorder and cancer, Deb describes her reality as one of constant adjustment. “Some days, the mental illness is harder on me than the breast cancer,” she says. Her transparent advocacy helps others balance emotional health with ongoing treatment. 

In 2023, Deb faced a new, separate early-stage breast cancer diagnosis. Treating both simultaneously tested her physically and emotionally, but her resilience remained unshaken.

Deb’s breast cancer experience continues to evolve. Today, her scans again show no evidence of active disease, yet she acknowledges the uncertainty that remains including being on active treatment. What keeps her grounded, she says, is hope: hope for herself, for her daughter, and for a better understanding of metastatic disease. “Do it for you,” she tells others living with this diagnosis. “You deserve to have hope for yourself.”

Watch Deb’s video above and scroll down to read the edited transcript of her interview for more on how:

  • Metastatic breast cancer is lifelong and demands ongoing adaptation
  • Hope can evolve, from doing it for others to valuing one’s own life and wellbeing
  • Mental health challenges can be as significant as physical ones
  • Support networks and advocacy communities provide essential strength
  • Parenthood can coexist with cancer care when boundaries and love guide the balance
  • Name: Deb O.
  • Age at Diagnosis:
    • First Diagnosis: 37
    • Second Diagnosis: 42
  • First Diagnosis:
    • First Diagnosis: De Novo Triple-Positive Breast Cancer
    • Second Diagnosis: ER-Positive, HER-Negative Breast Cancer
  • Staging:
    • First Diagnosis: Stage 4
    • Second Diagnosis: Early-stage
  • Symptoms:
    • First Diagnosis: Appearance of lump that later on increased in size, orange peel-like skin around inverted nipple, persistent ache under right arm
    • Second Diagnosis: Appearance of lump
  • Treatments:
    • First Diagnosis: Chemotherapy, targeted therapy, hormone therapy
    • Second Diagnosis: Surgery (mastectomy), chemotherapy, radiation therapy, CDK 4/6 inhibitor
Deb O. breast cancer
Deb O. breast cancer
Deb O. breast cancer
Deb O. breast cancer
Deb O. breast cancer
Deb O. breast cancer
Deb O. breast cancer
Deb O. breast cancer
Deb O. breast cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Deb’s Interview
  1. Hi, I’m Deb
  2. My diagnosis and how my family and I handled it
  3. Navigating urgency and my first treatments
  4. Advocating, community, and mental health
  5. My second diagnosis: finding out I had a new cancer
  6. Living with metastatic breast cancer
  7. Advocacy and support organizations
  8. My advice for others

Hi, I’m Deb

I live with metastatic breast cancer, HER2-positive, hormone receptor-positive. I’ve been living with it for seven years. I also have an early-stage breast cancer diagnosis from 2023. I’m living in southern Utah right now.

I’m a mom to a beautiful 11-year-old daughter. Before motherhood, I was an activist for over 20 years. I’m also an English–Spanish translator and interpreter, with much of my time spent volunteering. 

Originally from California, when I moved to Salt Lake City, I found activist groups that interested me and poured my heart into community involvement. Everything changed when I had my daughter, but I continue to do advocacy now, with my focus shifting towards breast cancer. 

Advocacy is incredibly important to me; I’ve moved my background in mental health advocacy into the breast cancer world, because it’s the life I’m living now.

My daughter Estelar—her name means “stellar”—is the biggest-hearted, kindest kid you’d ever meet. She’s in sixth grade and was only four when I was diagnosed, so this is all she’s ever known: mom living with cancer. She’s very mature about it, and I take her to therapy so she has ways to cope. Estelar is a creative kid; she loves Roblox and graphic art, and she’s an artist, though she didn’t get that from me. She’s always trying to bring a smile to everyone she knows and is very protective of me. Sometimes, she takes on a caregiver role, and I have to remind her that I’m the mom and she’s the daughter. She’s incredibly sweet. Sometimes she offers, “Mom, you don’t have to walk me this morning if you’re not feeling well.” But I cherish our walks to school and always try to be there, unless I really can’t. Estelar has adjusted remarkably, though I do worry about her falling into caregiver habits. “I don’t want her to think that’s her job in any way”.

Therapy has helped a lot. When I was diagnosed, a hospital social worker took Estelar around the hospital and explained things in child-friendly terms, even using a doll. She’s always been aware that things are changing. She struggles sometimes, feels sad, but overall has been processing it very well. She’s able to talk to me about her worries, and she calls my infusion days “port medicine day.” It’s super cute. She knows I’ll feel a little worse the next day, but she’s so supportive.

My diagnosis and how my family and I handled it

The story of my diagnosis actually begins before 2018. In 2016, while breastfeeding, I felt a lump in my right breast. At an appointment, my provider told me it was probably just a clogged milk duct, saying I was too young for breast cancer and had no family history, so I let it go. 

Life got busy as a single mom of a two-year-old, and, as is common in Latino families, mothers often put their medical needs aside. But two years later, the lump had grown. In 2018, after encouragement from a new partner, I scheduled an appointment, and things moved quickly.

I was seen at a clinic; the second provider, a female physician, took things seriously. Within a day, I was scheduled for a mammogram and a biopsy at the Huntsman Cancer Institute. I was alone during the biopsy, which was incredibly painful and frightening. 

Soon after, I received the diagnosis call while boarding a train with my four-year-old daughter en route to preschool. I shared the news matter-of-factly with a friend on the train, holding back emotion for my daughter’s sake: “I’m a mom, and the day still had to go on. I would deal with this later.”

Later that day, reality hit as I was walking home, tears streaming down my face, carrying my daughter. It was a slow realization that everything would change. Nothing was ever going to be the same again.

Navigating urgency and my first treatments

That first month after diagnosis was a whirlwind. The hospital scheduled endless tests: PET/CT scans, a bronchoscopy, and port placement for chemotherapy. 

I hadn’t even decided what I wanted to do yet, but there was a sense of urgency. My oncologist reminded me, “You have a four-year-old, and this is aggressive cancer.” Therapy helped, and my top priority was doing whatever it took to be there for my daughter. Three weeks later, I was told my cancer was stage 4, metastatic, throughout the mediastinum and lymph nodes. 

It was a lot of uncomfortable first-time experiences, and honestly, I’m not really sure how I got through that, but I do know that I had a lot of community with me. Community support was invaluable; friends and community members helped with my child, appointments, and rides. 

By June 1st, I started my first chemo. My sister-in-law Jenny left her job to help, especially with my daughter. That summer, despite treatment and illness, we tried to have fun: concerts, dating, and staying active in the community. Through it all, I didn’t know what “metastatic” truly meant and thought I might beat cancer.

After chemo, my first PET scan showed “No Evidence of Disease” (NED). I celebrated, believing I had beaten cancer, but my doctor explained I’d need treatment indefinitely. 

I didn’t have time to feel angry because everyone was so excited by the clear PET scan news. The word ‘indefinitely’ just weighed on me.

Advocating, community, and mental health

Reaching NED was both joyous and sobering. 

For two years, I didn’t seek out other women with metastatic breast cancer; I didn’t want to know. But the pandemic changed things, and I found a strong online community. Treatment, scans, and appointments have become normal over the past seven and a half years.

I also live with bipolar disorder, which complicates everything. Some days, mental illness is harder than cancer. Abigail, an advocate friend, helps lift my spirits, shares memes, and trains me as a mentor for other patients.

My second diagnosis: finding out I had a new cancer

In 2023, I was ready to celebrate five years of living “NED” with metastatic breast cancer. But a month before my scheduled scans, I found a new lump while doing a monthly self-check. 

Scan day came just as Metastatic Breast Cancer Awareness Day arrived. I was hopeful, but my scan wasn’t clear. The whirlwind began again.

This time, I was older, without my in-person community, and faced a changing body from years of medication. After a painful biopsy, my partner by my side, the results showed it was a completely different breast cancer: hormone receptor-positive, HER2-negative. I got a second opinion from my first oncologist, who confirmed that it was a new cancer, not progression.

Treatment required chemo again, a pause in my metastatic regimen, and surgery, which I hadn’t been eligible for during my initial stage IV diagnosis. I had a mastectomy, another course of chemo, and suffered through radiation and new side effects like lung scarring. This time, my daughter had more questions, and could see I wasn’t as strong as the first time. You have to keep adapting, keep adjusting. That’s what it is like, living with multiple breast cancer diagnoses.

Months later, a clear scan brought relief. I could return to my regular treatment schedule for metastatic disease.

Living with metastatic breast cancer

Metastatic breast cancer never really goes away. 

There’s worry; will the earlier-stage cancer come back and metastasize? Will progression happen? 

Doctor appointments and scans consume my time, and sometimes it’s hard to find the fun I used to have.

Advocacy and support organizations

Any type of community you have is so beneficial when you’re going through a diagnosis.

Three organizations have been especially supportive. The first is Project Life, an online wellness house for women with metastatic breast cancer, with programs like journaling, yoga, and support sessions.

The second, Living Beyond Breast Cancer, holds advocacy training and mentorship programs, especially for young women diagnosed under 45.

The third organization, For the Rest of Us, is an online empowering community for women of color, focused on community education and fundraising.

Meeting others with breast cancer, in-person and online, brings joy and helps fight isolation, even though it’s tough losing friends to this disease.

My advice for others

There are many misconceptions about metastatic breast cancer. People need to know it is lifelong and incurable, and we need research for a cure. 

More people are living longer, thanks to medication advances, but also remember we are more than our diagnosis. We are mothers, daughters, partners, and community members.

Hope can be elusive, especially at low moments, even before cancer. But it’s vital. Don’t just have hope for your children or family. Have hope for you, because you matter, exactly as you are.

You’re not alone. Educate yourself, take care of your mental health, and seek counseling or support groups. Don’t wait too long to meet other people who get it. 

Don’t just exist with this illness. Live.

Deb O. triple-positive breast cancer
Thank you for sharing your story, Deb!

Inspired by Deb's story?

Share your story, too!

More Breast Cancer Stories

Bethany W. feature profile

Bethany W., Stage 2, ER+



Symptoms: Lump in breast and armpit
Treatment: Chemotherapy, double mastectomy, radiation
Bethany W. feature profile

Bethany W., Metastatic Breast Cancer



Symptom: Lower back pain
Treatments: Chemotherapy, radiation, maintenance treatment
Lainie J.

Lainie J., IDC, Stage 2, HER2+



Symptom: Lump in breast
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Symptoms: Breast shaped differently, dimple in breast, flat nipple
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Christine H., Breast Cancer



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Janice C. and Chelsey P. feature profile

The Right Dose



Metastatic breast cancer patients Janice & Chelsey use their voices and share how to find the right dose, how to bring it up with your doctor, and the importance of advocating for yourself.
Christine E. feature profile

Christine E., Stage 3 Triple-Positive



Initial Symptom: Lump in left breast
Treatment: Chemotherapy (AC-T), lumpectomy, radiation
Sarah encourages everyone to talk about cancer
Sarah M., Breast Cancer, HER2- ER/PR+, Stage 3, & Salivary Gland Cancer
Symptom: Lump in the mouth
Treatments: Surgery (lumpectomy), chemotherapy, radiation
Categories
Chemotherapy Hysterectomy (full) Low-Grade Serous Ostomy Ostomy reversal Ovarian Patient Stories Surgery Treatments

Advocating for Yourself: Kacie’s Experience with Ovarian Cancer

Kacie K. ovarian cancer

Advocating for Yourself: Kacie’s Experience with Ovarian Cancer (Stage 3 Low-Grade Serous Ovarian Carcinoma)

Kacie was diagnosed with ovarian cancer (stage 3 low-grade serous ovarian carcinoma) just after her 30th birthday. But her experience began years before with persistent, misdiagnosed symptoms, including painful periods and pelvic pain, that were repeatedly attributed to endometriosis. It was only after a 14-cm pelvic mass was discovered that she learned that her symptoms were really due to an uncommon, aggressive form of ovarian cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Support from her wife, Hayley, and family helped Kacie through the daunting series of treatments. Surgery brought both physical and emotional loss: the ovarian cancer had spread, resulting in a full hysterectomy and a devastating blow to her hopes of carrying a child. Post-surgical hurdles included bowel blockages, an ostomy, and a long, difficult recovery. Kacie’s resilience never faltered, though; she drew strength from her passions, especially photography, and documented this raw chapter in striking “rock the bald” portraits that would ultimately empower and encourage others facing similar diagnoses.

Kacie K. ovarian cancer

Kacie’s experience with chemotherapy and an ostomy came with unexpected challenges. She found chemotherapy less punishing than surgery, but adapting to life with an ostomy took time and self-compassion. As she healed, Kacie and Hayley pursued IVF and embraced a new vision of family. Connection with both Hayley and her grandmother, who would later undergo an ostomy herself, became a source of mutual healing and understanding.

Although her scans are now clear, the knowledge of a high recurrence rate, especially after a tumor rupture, lurks at the edges of each new day. Still, Kacie remains hopeful and honest. Through social media, she provides rare insight, advocacy, and practical guidance for others affected by low-grade serous ovarian cancer. Her story highlights the importance of self-advocacy and community.

Watch Kacie’s video and scroll down for her interview transcript. You’ll learn more about how:

  • Fertility challenges and loss may arise, but new paths to parenthood, like IVF, can bring hope and connection
  • Adjusting to life with an ostomy takes patience and experimentation, and sharing personal experiences can help others adjust
  • Joy and hope can coexist with fear of recurrence. Living authentically and embracing support is vital for long-term healing
  • Kacie transformed her most vulnerable moments into empowerment, helping both herself and others
  • No one should undertake the patient experience alone; support networks and openness are powerful tools
  • Name: Kacie K.
  • Diagnosis:
    • Ovarian Cancer (Low-Grade Serous Ovarian Carcinoma)
  • Age at Diagnosis:
    • 30
  • Staging:
    • Stage 3
  • Symptoms:
    • Pelvic pain
    • Sharp pains during menstrual periods
    • Inability to urinate normally
    • Bleeding
  • Treatments:
    • Surgeries: full hysterectomy, ostomy surgery, ostomy reversal surgery
    • Chemotherapy
Kacie K. ovarian cancer
Kacie K. ovarian cancer
Kacie K. ovarian cancer
Kacie K. ovarian cancer
Kacie K. ovarian cancer
Kacie K. ovarian cancer
Kacie K. ovarian cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Kacie’s Interview
  1. My name is Kacie
  2. Life before diagnosis: my family, work, and passions
  3. My early symptoms were misdiagnosed
  4. The moment everything changed
  5. Coping with fertility loss and IVF hope
  6. Chemotherapy and adjusting to an ostomy
  7. Living with the fear of recurrence
  8. Navigating marriage and my mental health
  9. Ostomy reversal and helping others
  10. My social media advocacy
  11. What I want people to know

My name is Kacie

I was diagnosed with stage 3 low-grade ovarian cancer. It’s a very rare cancer. I was diagnosed when I was 30 years old in December 2024.

Life before diagnosis: my family, work, and passions

When I’m not working, I travel to see my family and friends in Chicago and Michigan. My dad passed away from cancer a couple of years ago, so going home can be tough. But I recently got married; my wife Hayley and I were married last year. Her family has surrounded me with so much love during this whole experience. My mom has been able to visit a few times, but it’s not quite the same. I’m so grateful for them.

I enjoy photography, mostly weddings and engagements. Right after my clear scan, I even shot a wedding after chemo. I was weaker, but I did it, and it felt amazing. I also love cooking for my wife and exploring the outdoors. We recently hiked the Grand Canyon.

We just love little adventures together. That’s what makes me happy.

I did a photo shoot to “rock the bald.” Some shots included scarves and wigs, but that plain one was my favorite.

It was important for me to document that time. A photographer friend invited me to her favorite studio. We just had fun with it, and I wanted something to look back on. I knew I’d never look like that again, so why not show it to the world?

When I got the photos back, I was in love. She captured them beautifully. Fun, candid moments and even the bald ones looked powerful. But sharing them publicly was scary at first. It’s a little bit exposing myself to social media, like fully bald for the first time, which is a scary thing to do.

My early symptoms were misdiagnosed

I had symptoms for years; really painful periods, severe pain during sex, and stabbing pelvic pain. At 21, my doctor told me it was probably endometriosis. For years afterward, I believed that and blamed every new symptom on “my stupid endometriosis.”

Then I developed urinary problems. I had to press on my pelvis to pee. During our honeymoon, it got worse. By December, my gynecologist couldn’t even do a Pap smear because of a large mass. She comforted me, saying, “You’re not crazy.”

An ultrasound showed a 14 cm pelvic mass. MRI scans couldn’t tell what it was connected to; maybe GI or ovarian. I was referred to a gynecologic oncologist who said I’d need surgery, but wasn’t sure which specialty needed to operate. Eventually, a colorectal surgeon joined the team.

I met them on my 30th birthday. The surgeon said I’d need major surgery with about two months of recovery time. The wait for surgery was long, and my symptoms got worse — urinary retention, bleeding, and pain.

I had to be such an advocate for myself because my symptoms were getting worse each day.

The moment everything changed

Days before surgery, I told my doctor it was really important to try to save my ovaries. I wanted to carry a child someday. She promised to try but couldn’t guarantee anything.

Surgery lasted eight hours. An hour and a half in, my wife got the call: “It’s definitely cancer.” They had to do a full hysterectomy because the cancer had spread through my pelvis and abdomen.

I woke up to everyone crying, but I didn’t yet know why. A nurse accidentally mentioned I’d had a hysterectomy, and my mom confirmed over the phone. I was in shock, but more sad about the hysterectomy.

The tumor had ruptured during surgery, spreading cancer cells. I spent 10 days in the hospital with complications like bowel blockage, an NG tube, and fainting during tests. 

I didn’t eat for 12 days. It was the worst pain of my life.

Coping with fertility loss and IVF hope

Hayley and I decided to move forward with IVF. She offered to carry our child. We’re using my sister’s donor’s sperm, connecting both sides of our family.

I feel so connected — even though it’s not genetically my child, it still links our families.

We’re currently doing IVF treatments and preparing for a transfer soon.

Chemotherapy and adjusting to an ostomy

Once I healed, I started six rounds of chemo every three weeks. Chemo was easier than surgery. Chemo was more of a breeze for me because surgery was the worst pain I’ve ever felt.

After my second chemo, I developed a mysterious allergic reaction and spent five days in the hospital.

The toughest part was adjusting to my ostomy. I cried often trying to change it. My skin was raw, and I had to experiment with supplies. Eventually, I found what worked.

When my July scan came back clear, I sobbed with relief. Still, low-grade ovarian cancer carries a 70% chance of recurrence, especially since my tumor ruptured.

You’re filled with relief after a clear scan, but the fear of recurrence never fully disappears.

Living with the fear of recurrence

I get scans every six months, but I’m already feeling symptoms again. It’s hard not to wonder.

I stay busy, but sometimes fear creeps in. A friend’s cancer returned soon after chemo, and she couldn’t be treated. “That’s my worst fear.” Still, I stay outwardly positive, not fake; just hopeful.

I’m not faking it. Some people don’t know the tough stuff. They just see what I show on social media.

Navigating marriage and my mental health

We got married right before all this, and it changed everything. But I stay focused on positivity; our house, our dream of having kids, hiking, and traveling.

I see us making friends with the neighbors, traveling with my flight benefits, and raising kids. I’m not negative all the time; just real.

When dark thoughts come, Hayley gets me outside to hike or enjoy the sunshine. Being outdoors brings peace. I haven’t felt this much joy in a long time.

Ostomy reversal and helping others

I recently had my ostomy reversed and healed quickly. I was only in the hospital for two days. It felt incredible to no longer have the bag.

I’ve shared ostomy videos on TikTok — how to change it, which supplies helped. After my reversal, my grandmother got an ostomy, and I was able to help her.

That was full-circle. I could help her the way I wished someone had helped me.

My social media advocacy

I share my diagnosis on Instagram and TikTok because low-grade ovarian cancer is rare. When I was diagnosed, I searched for people like me online. I want to be that person for someone else.

I posted a lot during chemo, but less now. Hayley keeps telling me to post more, but I’m figuring out how to share again.

I want to use my story to educate and connect with others facing the same rare cancer.

What I want people to know

If you take one thing from my story, it’s this:

Take things day by day. Don’t get overwhelmed by the big picture. Focus on what you can do today.

And if you’re going through chemo, don’t feel bad about doing nothing, because your body literally can’t.

Kacie K. ovarian cancer
Thank you for sharing your story, Kacie!

Inspired by Kacie's story?

Share your story, too!

More Low-Grade Serous Ovarian Cancer Stories


Maurissa M., Low-Grade Serous Ovarian Cancer



Symptoms: Pressure on bladder, throbbing pain, could feel growth on right side of abdominal area
Treatments: 5 surgeries (official diagnosis after 3rd)
...

Alisa M., Low-Grade Serous Ovarian Cancer



Symptoms: Occasional rectal pain, acid reflux, bloating, night sweats
Treatments: Debulking surgeries, chemotherapy, immunotherapy
...

Cheyann S., Low-Grade Serous Ovarian Cancer, Stage 4B



Symptoms: Stomach pain, constipation, lump on the right side above pubic area

Treatments: Cancer debulking surgery, chemotherapy (carboplatin & Taxol, then Doxil & Avastin)
...
Kacie K. ovarian cancer

Kacie K., Low-Grade Serous Ovarian Cancer, Stage 3



Symptoms: Pelvic pain, sharp pains during menstrual periods, Inability to urinate normally, bleeding

Treatments: Surgeries (full hysterectomy, ostomy surgery, ostomy reversal surgery), chemotherapy
...
Categories
Chemotherapy Colectomy Colon Colorectal Metastatic Patient Stories Surgery Targeted Therapy Treatments

“It Hit Me Like a Brick Wall”: Kailee’s Stage 4 Colorectal Cancer Story

Kailee O. stage 4 colorectal cancer

“It Hit Me Like a Brick Wall”: Kailee’s Stage 4 Colorectal Cancer Story

Colorectal cancer during pregnancy is a rare and deeply challenging experience, one that Kailee knows about firsthand. Diagnosed at 34 while pregnant with her second child, Kailee’s experience challenges many assumptions about who colorectal cancer affects and what symptoms matter. 

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Kailee describes her earliest symptoms: a sensitive stomach she took as “normal,” bleeding during bowel movements (which she was told was likely due to hemorrhoids), and persistent fatigue. These signs intensified quickly during her second pregnancy and were accompanied by abdominal and back pain. Like many busy parents, she prioritized her family over her own symptoms, a decision she now reflects on with candor: “I put myself on the back burner, which I regret.”

Kailee O. stage 4 colorectal cancer

A turning point came through genetic testing for Kailee’s pregnancy, which led to unexpected results and concern from her care team. She was quickly referred for advanced genetic counseling and imaging, which ultimately revealed a mass in her colon and lesions in her liver and lungs. The diagnosis was advanced, stage 4 colorectal cancer, requiring urgent and complex decisions. Kailee credits her support network, her mother’s care, and her coach’s drive for helping her face the toughest treatment choices, such as pursuing chemotherapy while pregnant.

Throughout her colorectal cancer experience, Kailee’s resilience is anchored in sports, coaching, routine, family, and peer support. She continues treatment with hope, balancing motherhood, business ownership, and rounds of chemotherapy. Her reflections on positivity, advocacy, and adapting to life’s curveballs offer wisdom beyond medicine: “It’s a marathon, not a sprint. With positivity and perseverance, things can happen.” 

Kailee’s story shines a light on the importance of listening to your body, advocating for yourself, and knowing that no one is ever truly alone with colorectal cancer. Watch her video above and browse the edited transcript of her interview below to learn about how:

  • Listening to your body and not dismissing early symptoms can make a meaningful difference in seeking timely care
  • Demanding answers and advocating for yourself in medical settings is essential, even if you have to push for multiple opinions
  • Support from community, family, and peers deeply influences resilience during a colorectal cancer experience
  • There is no “right” path for complex decisions during cancer, especially when parenting and family are involved
  • Transformation is possible: Kailee’s experience shifted her focus from coaching youth basketball to embracing each day with her children
  • Name: Kailee O.
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 4
  • Age at Diagnosis:
    • 34
  • Mutation:
    • BRAF V600E
  • Symptoms:
    • Sensitive stomach, sometimes leading to vomiting after eating
    • Bleeding during bowel movements
    • Persistent fatigue
    • Back pain
    • Abdominal pain
    • Anemia
    • Significant symptom flare-up during second pregnancy
  • Treatments:
    • Surgery: colectomy
    • Chemotherapy
    • Targeted therapy
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Kailee’s Interview
  1. My name is Kailee
  2. Navigating an athlete’s mindset after my stage 4 colorectal cancer diagnosis
  3. My early symptoms and missed signs
  4. My second pregnancy revealed that I had cancer
  5. The moment everything changed
  6. Navigating my colorectal cancer treatment options
  7. Life in active treatment
  8. Finding community and support
  9. Reflections on my colorectal cancer diagnosis and staying positive
  10. What I want others to know

My name is Kailee

I was diagnosed with stage 4 colorectal cancer.

So my grandpa, Bob McDonald, is a legendary basketball coach. He was from Chisholm, Minnesota. If anyone who has ever followed Minnesota basketball has heard of Chisholm, Minnesota, and their wonderful, amazing basketball teams, you go into their gymnasium and it kind of feels cozier. He was a coach there for over 50 years. He has over 1,000 wins. My dad, who is the oldest of six, also played basketball. My dad has three brothers and two sisters. They all played basketball, and they all also became coaches, following in the footsteps of my grandpa. My dad was the high school boys’ basketball coach in Cambridge, and still is. We grew up going to games. My mom will say that my siblings and I were all born on a game night. My dad coached and then would come to the hospital. I actually remember my younger brother being born because I was six years old; my dad brought us to the game, my mom was at the hospital, and we had the cheerleaders watch us until the game was over, then we went home. I ended up playing basketball at a young age. My brothers played in high school and actually played in college. I played four years of college basketball at UW-Superior. I loved every minute of it. It was a great experience. I can relate a lot of my life to being a college athlete. I think it prepared me a lot for what has happened in my life and set me up for success. It was a huge part of my life growing up.

After playing college basketball, I ended up coaching at a local high school. I coached there for 12 years. This will be my first season not coaching as an assistant coach, and I loved it. I loved giving back to the game, working with young females in our community. Being able to connect with them, teach them, and mentor them was really important and very fulfilling for me.

Navigating an athlete’s mindset after my stage 4 colorectal cancer diagnosis

When I was first diagnosed, it hit me like a brick wall. I never would have thought that at 34 years old I’d be dealing with this type of thing. Especially as a former athlete, you just kind of expect things to make sense with your body. 

I knew something was wrong. I wasn’t feeling well, was tired all the time, and finally, getting that diagnosis kind of made sense of all the feelings I had. I was having pain I’d never felt before. I worked out my entire life and never felt pain like this. 

At one point, it was relieving to get a diagnosis to explain what was happening. At another point, it was definitely emotional; something I wasn’t expecting and wouldn’t wish on anyone else.

My early symptoms and missed signs

I’ve always considered myself to have a sensitive stomach. That was my first symptom. I would eat certain foods, and my stomach wouldn’t agree with them. I’d need to use the restroom right away. I thought, “I need to eat better.” When I ate good things, I didn’t have those symptoms. Actually, when I was pregnant with my first child, I had some bleeding when passing bowel movements. As a first-time mom, my red flags were up with every symptom. 

I called my OB’s hotline. They had me come in, checked me out, and said hemorrhoids are super common in pregnancy. I trusted my medical professionals and just accepted it. That bleeding continued, but I was busy, so I put myself on the back burner, which I regret. 

When I was pregnant with my second, my symptoms really started flaring up. It felt like right when I got pregnant, the signs started, and they happened quickly. I was experiencing bad back pain, abdominal pain, and my sensitive stomach intensified; I’d eat something and end up vomiting.

During pregnancy, I attributed the vomiting to morning sickness, but I’d never felt severe stomach pain after eating, which led to vomiting. As my pregnancy progressed, symptoms worsened; worse back pain, worse abdominal pain. Having had a previous C-section, I thought my abdominal pain might be from that. I asked my friends, and some said they had abdominal pain, but not what I felt. I was referred to a chiropractor for my back, but got no relief. Eventually, I realized something was not right.

Throughout this experience, I’ve learned that it’s always important to listen to your body and pay attention to its signs. Your body gives signs that something is wrong. As moms, we can think we’re overreacting; “I’m fine.” That’s always been my mindset. I’ve never been one to go to urgent care unless things are really bad. It’s important to listen, to speak to your medical providers, and always push for answers. If you’re not getting relief or your questions aren’t answered, push for those answers.

My second pregnancy revealed that I had cancer

We decided to do the NIPT genetic testing. It’s a blood test usually offered during pregnancy. With our first, we got it done at 12 weeks. Now, it’s offered as early as nine weeks. My husband and I wanted to find out the gender ASAP, so I went in at nine weeks, on Black Friday. The results took about two weeks. With all my symptoms, this pregnancy felt so different from my first. I was sure it was a boy.

I got the results while working out, called my husband, opened the results on my chart, and it came back “not reportable.” I messaged my OB, who said it was probably too early, low fetal fraction, and to come back in a week. At 11 weeks, I did the test again. Two weeks later: “not reportable” again. At this point, I was worried. I Googled, which only made it worse. We were referred to genetic counseling and did another test through a different lab right before Christmas. After waiting about a month, I got a call from a genetic counselor: “Do you want to know the gender?” Yes; it was a girl, but she had triple X syndrome, which is usually not serious, sometimes associated with learning disabilities or height differences.

A few days later, my main genetic counselor called. She had gotten a call from the lab: “a lot more genetic abnormalities” that don’t show up on the regular test. The lab wondered if these came from me, not the baby. They wanted to release the results. I was emotional and had to play in a basketball game after that call, putting on a brave face. That Monday, we met with the high-risk OB. There were 19 pages of genetic abnormalities. They said something was going on with me.

When I found out it was likely me, not the baby, with the abnormalities, I called my husband immediately. I was home alone, very emotional. I called my mom, she’s my best friend, and told her [what had happened]. She agreed to come up for my appointment the next Monday. 

I was scared and did another deep dive on Google. My aunt is a NICU nurse practitioner, and she reassured my mom and me that there are lots of possibilities, so we just had to wait and see. That helped me think positively, “I’m going to be okay,” I thought, and just waited for the follow-up.

The moment everything changed

After those genetic results, we did an ultrasound to check the baby. I had a mass directly in front of my uterus, which had looked like part of my baby bump but was actually the mass. They scheduled an MRI for the next day. 

On Wednesday, I got the MRI, and my MFM called that afternoon while my mom was still with me, thankfully. She said, “Kailee, we see cancer, and it looks advanced.” I looked at my mom; we were in disbelief. I felt like I would pass out; my life flashed before my eyes. It was the worst moment of my life, a feeling I never want to experience again, or want anyone else to. I felt so bad that my mom had to hear and feel my emotions, but I was also grateful she was there. 

I learned there was a tumor in my colon, spots in my liver, and spots in my lungs. At that point, I didn’t know it was stage 4, but once I Googled “colon cancer in liver and lungs,” stage 4 came up immediately. I saw all the percentages for life expectancy, and I broke down. I had just turned 34. 

The thing that broke me the most was thinking about my kids and the possibility of not being there for them.

Navigating my colorectal cancer treatment options

Once I was diagnosed, my dad came up after basketball practice. My immediate family gathered, and I had to break the news to my brothers and everyone, which was awful. In Duluth, we have a great hospital system, but Minnesota is also home to Mayo Clinic, so we decided to go there. We got an appointment for the following Monday. 

At Mayo, my first appointment was with someone in the gastro/liver specialty since I wasn’t officially in oncology yet. The first thing was biopsies of my colon and liver to see if they were the same cancer. After all that, I finally met with my oncologist, a world-renowned doctor. He gave us two treatment options: a less aggressive option if I kept the baby, or a more aggressive one if I terminated the pregnancy. It was the worst thing I’ve ever had to go through, choosing between myself and my baby.

At 19 weeks, we had an anatomy scan. The baby looked amazing; big, growing, no concerns. Despite not wanting to talk about abortion, I was at my lowest of lows and couldn’t put myself through any more. I felt good enough and told them I wanted to keep the baby and do treatment while pregnant. They said, “We don’t know what will happen. We can give you chemo, but it could put you into early labor.” My biggest fear was early labor and the baby not surviving. I was able to do four rounds of chemotherapy while pregnant. 

She’s here. Six months old, chubby, happy, the best baby ever. There wasn’t a right choice, but I don’t regret my decision.

Being pregnant and going through this was tougher on my body. I was growing a baby, more tired, chasing a toddler. Looking back now, it’s all foggy. Everything was new, from chemo to treatment as a whole. I had a winning mindset: “I’m going to do this chemo, feel good, do everything I can.” 

I’m on a different, more aggressive treatment now, but I don’t see major differences between being pregnant or not, other than the physical exhaustion.

Life in active treatment

Currently, I have my 18th round of chemo next week. I’ve done 17 rounds: four during pregnancy, I had my baby, and then 13 more. 

I do chemotherapy infusions every other week, get sent home with a 46-hour pump (which I do not recommend), and take oral chemo daily; that’s specific to my cancer mutation. 

The targeted treatment has significantly reduced many of my tumors, and we’ve seen great results. The plan is to continue, hoping some tumors get small enough for surgery. Right now, I don’t qualify for surgery, but the goal is to keep shrinking, get rid of things, and keep going.

Since my treatments are every other week, my life feels like a week on and a week off. I’m a business owner, so I’ve kept working throughout treatment, which is good. I love what I do, and it gets my mind off things. During my chemo weeks, my mom comes and stays for about four days to help with the girls and the house. On my good weeks, we operate as normal. I feel good, just might need a nap here or there. We try to live a normal life, do fun things, travel more, and spend as much time as we can with family.

When first diagnosed, I wondered if I should pull my kids from daycare to keep them with me, but we decided to keep their routine. Keeping things normal for them is important. My two-and-a-half-year-old knows when it’s “Mommy’s chemo week.” She knows I have an “owie,” sleeps a lot, and comes in for cuddles. It’s tough that she’s starting to notice, but we try to do things we always did and keep life as normal as possible.

Finding community and support

Sports give you a sense of community. I’ve met so many people through coaching: former players now adults, people having kids, and those coming back into the game. Many have been so supportive throughout my journey: benefits at games, special cancer nights, and more. Coaching and involvement in basketball have brought tremendous support and people reaching out just to say they’re thinking of me and praying for me. It means a lot to hear from them.

I’ve connected with two other girls my age diagnosed with stage 4 colon cancer via NIPT while pregnant. One is from Louisiana. We connected on Facebook, talked, and she told me all she’s been through. My mother-in-law had heard of someone in Minnesota with a similar story. Now I’m in a group chat with four young women, all with different treatments, fighting the same disease. 

It’s so helpful to compare notes, ask questions, and support each other. My friends and family are great, but having that peer support is amazing, people who really know what this is like.

Reflections on my colorectal cancer diagnosis and staying positive

It’s not something I ever expected, being this young and diagnosed with colon cancer. I’ve met many young people with it, even younger than me. Actually, everyone in my group chat is younger, and I’m almost 35. It just shows that cancer can affect anyone, whether old, young, rich, or poor. Anyone. It’s important to watch for symptoms and advocate with your medical professionals if you have concerns.

It’s so important to go in with a good mindset. I speak with a therapist, which is very helpful. I told her, “Am I crazy for thinking I can beat this?” She said, “You’re an athlete; would you ever go into a game thinking you’re going to lose?” If you do, you lose. 

As a coach, I always tell my girls to think they will win. That stuck with me. Having a positive mindset is key. Days are tough; sometimes I get bad results, sometimes I get good ones. 

It’s a marathon, not a sprint. With positivity and perseverance, things can happen.

What I want others to know

My biggest advice is to advocate for your care. Whether you’re in treatment, about to be diagnosed, or having symptoms, always advocate for yourself and for what you deserve. 

I’ve heard stories of people reaching remission just by pushing, getting second, third, fourth, fifth opinions. Just because one person says no, doesn’t mean the next won’t say yes. 

Always advocate for yourself, push for what’s right, and fight for answers.

Kailee O. stage 4 colorectal cancer
Thank you for sharing your story, Kailee!

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More Metastatic Colon Cancer Stories

 
Raquel A. feature profile

Raquel A., Colorectal Cancer, Stage 4



Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
Treatment: Chemotherapy

Steve S., Colorectal Cancer, Stage 4



Symptoms: Blood in stool, changes in bowel habits, feeling gassy and bloated

Treatments: Surgery, chemotherapy, monoclonal antibody, liver transplant
Jessica T. feature profile

Jessica T., BRAF Mutation Colon Cancer, Stage 4



Symptoms: Severe stomach cramps, diarrhea, vomiting, anemia (discovered later)

Treatments: Surgery (hemicolectomy), chemotherapy

Jennifer T. feature profile

Jennifer T., Colon Cancer, Stage 4



Symptoms: Weight loss, coughing, vomiting, sciatica pain, fatigue

Treatments: Surgeries (colectomy, lung wedge resection on both lungs), chemotherapy, immunotherapy
Kasey S. feature profile

Kasey S., Colon Cancer, Stage 4



Symptoms: Extreme abdominal cramping, mucus in stool, rectal bleeding, black stool, fatigue, weight fluctuations, skin issues (guttate psoriasis)
Treatments: Surgeries (colectomy & salpingectomy), chemotherapy

Categories
Chemotherapy Immunotherapy Patient Stories Radiation Therapy Rhabdomyosarcoma Sarcoma Soft Tissue Sarcoma Treatments

Kate Navigates College and Stage 4 Rhabdomyosarcoma: A Story of Hope

Kate J. rhabdomyosarcoma

Kate Navigates College and Stage 4 Rhabdomyosarcoma: A Story of Hope

Just as she was entering her sophomore year at Indiana University, Kate’s life shifted in an instant. What began as a subtle, easily dismissed ache on the lower right side of her body soon grew into something she couldn’t ignore. A series of scans and referrals brought her to Siteman Cancer Center, where she learned the diagnosis no one her age expects to hear: stage 4 rhabdomyosarcoma, a cancer commonly found in the budy’s muscles. From that moment on, everything changed. Her academic plans, her routines, and her daily life were all suddenly rewritten.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Supported by her family, friends, and a dedicated college community, Kate charted her rhabdomyosarcoma treatment over fifty-two weeks of chemotherapy and radiation. “My doctor told me not to take classes, but I needed something to keep my mind busy. I’m now on track to graduate on time,” she shares. 

Kate J. rhabdomyosarcoma

Kate’s experience was marked by learning to navigate social interactions as a sorority member post-treatment and finding motivation through small but meaningful acts of kindness. Notably, a freshman’s positive comment about her short hair and an unforgettable shoutout from Justin Timberlake in Dallas fueled her resilience.

The disease’s response to treatment shifted the path again when, after apparently successful therapy, scans revealed new cancer spots. Kate began another round of treatment, determined to reach stability even when remission seemed unlikely. Her optimism persists. “I know there’s still hope,” she affirms.

Through open dialogue about her diagnosis, forming connections with other young survivors, and fostering awareness, Kate embodies the expression, “You’re stronger than you think.” Her story is a testament to adaptability, support, and the power of patient-led advocacy for this rare kind of sarcoma. 

Watch Kate’s video and read through the edited transcript of her interview below for more on how:

  • Listening to your body and recognizing subtle symptoms like unexpected discomfort can be critical to early diagnosis and timely treatment
  • Academic and social support can empower patients to remain connected and resilient during extensive treatment
  • Small acts of kindness, such as reinforcement from peers, can profoundly impact confidence and well-being
  • Treatments change and setbacks occur, but maintaining hope and adaptability fosters strength and stability
  • As Kate says, it’s okay not to be okay. Every patient deserves validation, rest, and self-compassion as part of their experience
  • Name: Kate J.
  • Diagnosis:
    • Rhabdomyosarcoma
  • Age at Diagnosis:
    • 20
  • Staging:
    • Stage 4
  • Symptoms:
    • Discomfort on the lower right side of the body
    • Pain when sitting down
  • Treatments:
    • Radiation therapy
    • Chemotherapy
    • Immunotherapy
    • Clinical trial
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Kate’s Interview
  1. My name is Kate
  2. My first symptoms
  3. How I shared the news
  4. What my treatment looked like
  5. Returning to school
  6. The Justin Timberlake moment
  7. The cancer came back
  8. Navigating hope, college, and the future
  9. Being open about my diagnosis
  10. How I’ve found support
  11. What I want people to know

My name is Kate

I was diagnosed with stage 4 rhabdomyosarcoma in July 2023.

I’m in my senior year of college at Indiana University. I was in my freshman year before I got diagnosed. I joined a sorority that’s big on philanthropy, which I love, and we do a lot of fundraising for breast cancer.

I grew up dancing for about 15 years, from age three to 18, so I still stay connected with the dance community. I’m a triplet, with siblings who keep me going, plus an older sister who’s three years older than us. We’re a busy household with three dogs, and our home is full of life.

My first symptoms

After my freshman year, around Memorial Day weekend, I started feeling something off near the right side of my lower body. It was uncomfortable to sit down, but I thought it was something minor, like a hemorrhoid or an ingrown hair.

When I went to my doctor for a routine physical, I mentioned it. He referred me to a rectal surgeon, which sounded strange for what I was feeling. I didn’t go and instead saw an OB-GYN, who ordered a CT scan. The scan led to a referral to a gynecological oncologist, a term I didn’t even know at the time.

That appointment took a month to get, and during that time, things got worse. When I finally had a PET scan, they told me to come to the hospital immediately. I remember walking in and seeing the words “Siteman Cancer Center.” I still didn’t think it was cancer.

Then the doctor’s fellow came in and told me that I had stage 4 rhabdomyosarcoma. My first reaction was to laugh. Then I cried, after seeing my dad cry first. My mom and dad were heartbroken. I was only 20. 

Later, I learned that my parents already knew the diagnosis before I did; they were told over the phone.

How I shared the news

I told my closest friends in a small group chat we call “Crazy Eight.” I didn’t want them to feel sorry for me, so I framed my message as something inspiring, our “new fight.” 

The support I received was unbelievable, both from my friends and online.

I posted on Instagram and gained over 3,000 new followers in a week, all sending encouragement rather than pity.

What my treatment looked like

My treatment plan included 52 weeks of chemotherapy and radiation. The idea was to take it semester by semester. My doctor initially wanted me to take a break from school, but I wanted to keep my mind busy.

I started with general education courses and discovered I could manage them. My professors were understanding and gave me flexibility when needed.

I’ve been able to stay on track and will graduate on time.

Returning to school

I returned for my junior year after finishing treatment and rang the bell in July 2023.

Moving back into the sorority house with 100 girls in August was a culture shock, especially since I was still at high infection risk. Adjusting socially was hard, too.

Being 21, surrounded by parties, meant learning to say no. My body couldn’t handle alcohol like before. 

Some people didn’t know my story, and I worried about how I looked with short hair. But a freshman told me one day, “You look beautiful; I love your haircut,” and it made my whole week.

It’s also amazing that Greek Life at Indiana University came together and raised some money to help me out. For the first time, it felt like I was finding my footing again.

The Justin Timberlake moment

One incredible experience was meeting Justin Timberlake. 

I’m from a big hockey family, and my brother’s connection led to JT’s manager hearing my story. Justin filmed a personal video inviting me and my whole family to any of his tour stops.

We went to Dallas in June 2024, a month before my bell-ringing. He gave me a shoutout mid-show, saying, “She’s due to ring the bell in one month.” 

He treated us like friends, asking for updates and wanting to see the ringing video.

The cancer came back

In November 2024, a scan revealed a small neck spot. Initially, my doctor thought it might be a false positive, but by December, new spots appeared. A biopsy confirmed that the cancer was back.

I restarted chemo in January, plus immunotherapy, which was new to me. When a trial drug failed, I switched back to a previous chemo regimen and added radiation. After the October 2025 scans, my doctor said this would be hard to treat and that remission might not be likely.

Still, I feel hopeful. Treatments keep evolving, and my body has always responded well. My current goal isn’t just remission. It’s stability and strength.

Navigating hope, college, and the future

I take things day by day. 

My college experience looks different, but I’ve found my new normal. My friends keep me included through phone updates, and I visit when I can.

I even have an internship in the medical device industry now. The company has been flexible with my treatment schedule. They told me, “We can work with you.” That kindness made me feel like I belong.

I am a totally different person compared to who I was just two years ago, but in a good way. I’ve matured and learned a lot, and honestly, that’s what makes me glad that these things happened. I wouldn’t be who I am today if I hadn’t been diagnosed with rhabdomyosarcoma.

Being open about my diagnosis

I’ve always been open about my story. When people ask questions, even tough ones, I’d rather they learn than make assumptions.

Only once did someone cross a line, asking, “How much longer do you have to live?”

I told them, “My doctor hasn’t said anything, so as far as I know, I have as long as you do.”

How I’ve found support

My cancer is pediatric-type, but I’m treated on the adult side, so there aren’t many people my age with sarcoma. Still, I’ve met one girl who became a close friend. We both relapsed and remind each other that we can do it again.

I’ve connected with other young cancer survivors through university, social media, and across state lines. 

There’s even another triplet in St. Louis who’s my age and who has a different sarcoma. It’s such a small world.

What I want people to know

Our family motto is “Live every day like it’s your last.” So you have to keep pushing and enjoy your life.

For those who might be watching my story, I want them to know that it’s okay not to be okay. Bad days happen even when you try to smile through them. Let yourself rest and feel those emotions. 

You’re stronger than you think.

Kate J. rhabdomyosarcoma
Thank you for sharing your story, Kate!

Inspired by Kate's story?

Share your story, too!

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Symptoms: Leg tightness, increased swelling in leg
Treatments: Chemotherapy infusion (Methotrexate, Navelbene), oral chemotherapy (Nexovar)
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Symptoms: Fatigue, lump in hip
Treatments: Surgery, radiation, chemotherapy
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Symptom: Lump in right armpit
Treatments: Chemotherapy, radiation, targeted therapy, clinical trials, surgery, including forequarter amputation
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Symptoms: Aching in arm, lump in forearm
Treatments: Chemotherapy (14 rounds), surgery (of radius), radiation (36 sessions)
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Brandi B., Ewing Sarcoma (Soft Tissue), Stage 1B



Symptoms: Extreme fatigue, lump in pelvic area
Treatments: 17 cycles of chemotherapy in-patient at hospital with (leg-sparing) surgery in between
...
Sophie F. Ewing sarcoma

Sophie F., Ewing Sarcoma (Soft Tissue), Stage 2



Symptoms: Appearance of a nickel-sized, blue, and solid but soft and spongy mark on upper left arm

Treatments: Surgeries (cyst excision surgery, wide excision surgery), chemotherapy
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Louis D., Gastrointestinal Stromal Tumor (GIST)



Symptom: Feeling the need for constant urination
Treatments: Surgery to take out the tumor, maintenance chemotherapy (3 years)
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Kara L., Synovial Sarcoma, Stage 1B



Symptoms: Pain behind left knee, needle-like sensation in left foot
Treatments: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions)
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Jillian J., Synovial Sarcoma, Stage 3



Symptom: Pain in leg for over 15 years
Treatments: Surgeries (tumor resection, thoracotomy)
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Marisa C. feature profile

Marisa C., Synovial Sarcoma, Stage 4



Symptom: Small bump on the foot (stable for years, then grew during pregnancy), pain when pressed

Treatments: Surgeries (below-knee amputation, pulmonary wedge resections, segmentectomy), chemotherapy, radiation (lungs & hip)
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Julie K. stage 4 synovial sarcoma

Julie K., High-Grade Poorly Differentiated Spindle Cell Synovial Sarcoma, Stage 4



Symptoms: Chest and back pain after car accident, trouble breathing

Treatments: Chemotherapy, surgeries (lung resection, video-assisted thoracoscopic surgery or VATS, neurectomy, rib removal), radiation therapy (CyberKnife)

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McKenna A. synovial sarcoma

McKenna A., Synovial Sarcoma, Stage 3 Grade 3B



Symptoms: Insomnia, weak immune system resulting in persistent illnesses such as UTIs and strep throat, severe swelling in left leg

Treatments: Surgery (tumor excision), chemotherapy, radiation therapy (proton radiation), integrative therapies
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Monica

Monica H., IDC, Stage 2B & Undifferentiated Pleomorphic Sarcoma



Symptoms: Tightness and lump in left breast
Treatments: Chemotherapy, radiation, surgery

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Symptoms: Severe intolerance to food, nausea
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Categories
ALK Lung Cancer Metastatic Non-Small Cell Lung Cancer Patient Stories Treatments

Laura’s Stage 4 ALK+ Lung Cancer Experience Balances Treatment and Quality of Life

Laura R. ALK+ lung cancer

Laura’s Stage 4 ALK+ Lung Cancer Experience Balances Treatment and Quality of Life

For months, Laura managed a stubborn cough, but with a quiet pull from her intuition that something was not right. In South Carolina, where she ran a small handmade jewelry business, she also noticed deep fatigue and strange joint pain creeping into her days. These symptoms appeared slowly and at different times, so no clear connection was made. Intervention would come when, during a routine physical, she mentioned this year-long cough. A chest X-ray and CT scan were ordered right away and that’s when the truth emerged: a six-centimeter tumor and a diagnosis of stage 4 ALK-positive lung cancer.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Laura’s treatment for ALK-positive lung cancer initially focused on targeted therapies called tyrosine kinase inhibitors or TKIs. Laura cycled through several options, always balancing side effects against her quality of life. “If this is what my life is going to be like… it isn’t worth it,” she recalls, after struggling with the severe side effects of her first TKI. (Editor’s Note: TKIs work by blocking tyrosine kinases, enzymes that may be too active or may be found at high levels in some types of cancer cells. Blocking tyrosine kinases may help keep cancer cells from growing.)

Laura R. ALK+ lung cancer

Encouraged by her physician to prioritize what mattered to her, Laura took breaks, joined a clinical trial, and ultimately found a better fit with her current medication. “Patients should advocate for what works best; if side effects or treatments aren’t acceptable, speak with your doctor about changing things,” she says.

Laura’s ALK-positive lung cancer experience fundamentally shifted her identity and outlook. She speaks candidly about the grief and recalibration forced by advanced cancer, the evolving sense of self, and the acceptance of cancer as a chronic condition, if a life-defining one. Daily life is different, but Laura leans on support groups and prioritizes humor and connection.

“Given any type of tragedy, you either decide to learn from it, rebuild from it, or let it take you down,” Laura says. “And I think more of us decide not to let it take us down.” 

Watch Laura’s video above, and scroll down to read through her edited interview transcript for more on:

  • Why you should advocate for thorough diagnostics if your symptoms persist, regardless of smoking history or age
  • How quality of life is essential; it’s valid to adjust or pause treatment if side effects outweigh benefits
  • How proactive support in the form of family, community, mental health, and provider relationships can transform even the hardest experiences
  • Why humor, connection, and redefining identity are key to sustaining hope and finding meaning
  • How Laura has learned to accept new limitations, embrace choice, and support others through lung cancer community groups
  • Name: Laura R.
  • Age at Diagnosis:
    • 37
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • ALK
  • Symptoms:
    • Persistent cough
    • Fatigue
    • Bone pain
  • Treatments:
    • Targeted therapies: tyrosine kinase inhibitors (TKIs), including through a clinical trial
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Laura’s Interview
  1. My name is Laura
  2. My first symptoms and red flags
  3. Finding my care team
  4. My reaction to my diagnosis
  5. Genetic testing impacted my treatment options
  6. My experience with TKIs, their impact, and side effects
  7. My current work and support system
  8. The impact of cancer on my daily life
  9. Therapy experience and my quality of life
  10. My advice for others

My name is Laura

I live in South Carolina. I was diagnosed in May of 2023 with stage 4 non-small cell ALK-positive lung cancer.

It’s changed a little bit since my diagnosis, but before that, I owned a small handmade jewelry business. I still own it, but I do that part-time now. What I do for fun is horseback riding. I don’t get to do it as much as I’d like, but hopefully more so in the future now.

I try really hard to be funny. Whether or not I am, I don’t know, but I think I’m funny.

My first symptoms and red flags

It was hard because I overworked myself. I was very focused on work. I should have gone in sooner. 

The first sign was a cough that wouldn’t go away. I’d been coughing for almost a full year, but it wasn’t bad. It was just a little bit in the morning. Sometimes during the day, I wouldn’t cough at all. It was just in the morning. Sometimes the cough would produce phlegm, sometimes it wouldn’t. Some days it got better, other days it got worse. It was a persistent cough that didn’t go away. 

Over the years before my diagnosis, I became more fatigued, but gradually. I was approaching my late 30s, and I wondered, “Am I just getting old? Why am I tired all the time?” I also had a lot of joint issues, not debilitating, but pains in my wrist. I complained to my doctor, and she prescribed arthritis cream. I was in my 30s and wondered if that was normal. She said, “Yeah, it happens to some people.” 

Those were the main symptoms: joint pain, fatigue, but the biggest one was the cough. I was lucky to have a cough because where the tumor was located, it was close to a bronchial opening, so the tumor caused almost an obstruction. I was trying to cough it out, but you can’t cough out a tumor.

I didn’t go to the doctor immediately. I lived with it, hoping it would go away. I was self-medicating. I’d always had allergies, so I kept taking allergy medications, switching between Allegra and others, but nothing helped. 

At my yearly checkup, I talked about arthritis and back pain. I brought up the cough, and the doctor was concerned. She asked if I was from a region where there are common fungal infections in the lungs. I wasn’t. She thought a cough that long was unusual, so she sent me for a chest X-ray at the VA. The X-ray found a tiny nodule a few millimeters across. They said it’s common with service members and ordered a CT scan to monitor the size. After the CT scan, instead of a six-millimeter nodule, it turned into a six-centimeter mass, which is very large. That started the diagnosis process in May 2023.

Finding my care team

My first care team was a whirlwind, but I have healthcare through the VA, so it was all covered. 

They told me to see a pulmonologist. I was referred to Dr. Nicole Tanner at MUSC in Charleston. She is amazing. She made me feel comfortable. She showed me the CT scan and explained the next steps with biopsy and diagnosis. 

The VA is attached to MUSC, so I’ve received excellent care, and everything moved quickly. Waiting two days for a phone call felt long at the time, but the diagnosis from primary care to biopsy was within two weeks. I was given a pulmonologist and an oncologist. 

At the VA, you can get a second opinion, so I got recommendations for a local thoracic oncologist. I also researched and found a specific ALK-positive specialist.

My reaction to my diagnosis

The news was given to me over the phone, which was fine. After the CT scan, my primary care doctor called quickly and said, “We’re going to do this.” I asked, “Why do I need to see an oncologist? Could this tumor be something else?” She said, “No, unfortunately, it’s cancer.” 

It took me by surprise. I Googled possibilities, but didn’t think it was cancer. I said, “There’s absolutely no way.” 

It took me a long time to believe it. I don’t even know when I fully recognized I had lung cancer.

I am a nonsmoker. We all went through COVID and had coping mechanisms, but that was rare and not a daily thing. Cigarette smoke? No.

Being diagnosed and treated for cancer as a woman in your late 30s is intense emotionally, hormonally, and mentally, because you’re aging and things are changing. 

You think about childbirth, not being young anymore, friends with kids… it’s difficult to cope with all at once. I had to slow down after the diagnosis. It’s way too much for anybody to take on by themselves.

You have cancer, you can’t do this or that, you have to take medication, and then side effects prevent you from doing things. It’s too much.

Genetic testing impacted my treatment options

We waited to get my PET scan results to stage me. 

Since I wasn’t presenting as poorly as some, maybe because of my age, there was no need to start chemo until genetic results came back. The genetic results [ALK positive] gave good news; there was a targeted therapy for me. 

I started first-line therapy with my first TKI two years ago. Now I’m on my third.

Surgery isn’t an option, since my cancer is stage 4 metastatic; it has spread to different areas. Some elect to have surgery, but for me, surgery isn’t curative, so it’s not an option.

My experience with TKIs, their impact, and side effects

The first TKI wore me down. I lasted about a year, but couldn’t handle the side effects physically or mentally. I felt worse than before I had cancer, and I almost gave up. My specialist said that no one would force me to take it, which was freeing. I took a break, but the cancer grew back. 

Then Dr. Lynn at Mass General told me about a clinical trial with cutting-edge medication. It’s rigorously tested and the latest available. I got on the trial, but my liver couldn’t tolerate the medication, which is common. I had some side effects from the clinical trial drug, but it was much better than the first drug. I loved the medication and was sad to stop.

I stopped and started my third TKI a month ago, and I’m doing pretty well so far. Hopefully, this one will stick. The drug I’m on now has minimal side effects. I increased my dose after consulting with my doctor because I had no side effects and wanted to see if the higher dose would hold.

There’s no end to it; treatment keeps going. TKIs are not a cure but must be taken until they stop working. Monitoring is constant with CT scans every three months to check tumor size. If it stays the same, that’s good news. Residual cells never go away. Researchers are working on vaccines and cures, but it’s a long process.

I kept my care at Duke University Hospital, where the clinical trial was run and supervised by an ALK-positive specialist. Instead of returning to Charleston, I now see the ALK specialist at Duke.

My current work and support system

I’m doing jewelry part-time and have stepped back a lot. Having my own business is great because I can return when I want. The connections are still there, just fewer. I pick when to work.

I have a lot of friends. My recently made friend, Emily, now lives in Washington state and has helped a lot. My sister, my only family member, left before, and our relationship wasn’t good. The diagnosis didn’t improve things, but we worked hard to rebuild our relationship, and it’s gotten much better. That’s one good thing about cancer; it brought my sister and me closer.

The impact of cancer on my daily life

The first year was the hardest; the second year was also difficult, mostly in finding a new normal. It’s like grieving loss, scrambling to survive, and rebuilding. It’s completely overwhelming, but you either do it or you don’t.

I have to do it. With any tragedy, you either learn and rebuild, or let it take you down. Most decide not to be taken down.

The hardest moment I’ve faced so far was deciding to stop the first TKI. I was going through a lot, dealing with side effects, life changes, and reflecting on a year of medication with a worse quality of life. I’d basically given up and stopped medication. 

When I spoke to Dr. Lynn, she said, “What are you doing? You don’t have to take it.” I didn’t know that.

I’m fortunate to have supportive friends willing to help whenever I need it. Mental health is very important for people with this diagnosis since it’s life-changing. Some people aren’t sure what to do. There are many who care and want you to fight.

My identity has completely changed because I will always carry cancer; there is no cure. I think about death every day, almost like a built-in ticking time bomb. Not that I expect to die tomorrow, but it’s always there. At the same time, I appreciate life and can do what I want, such as take medication or not.

Therapy experience and my quality of life

I was already in therapy before the diagnosis and continued afterward. 

I learned to speak up and eventually switched therapists, which was the best decision. If you don’t like your therapist or aren’t getting better, get another one.

Quality of life is often overlooked in cancer care, but it’s crucial that patients aren’t tortured to death. For me, quality is more important than length of life. 

Everyone’s priorities are different. Some want to live at any cost. I think this changes how care should be delivered. 

If you don’t like your treatment, talk to your oncologist. There are usually other options. 

Advocacy is vital because your life won’t get better until you ask for change.

My advice for others

You’re not alone. 

One of the best things I did was find a support group online. A friend recommended it, and connecting with others who understand made a big difference. 

We all go through similar things, though differently. Having that support group has helped a lot over the past two years.

Laura R. ALK+ lung cancer
Thank you for sharing your story, Laura!

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Laura R. ALK+ lung cancer

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Categories
Carcinoma Ex Pleomorphic Adenoma Head and Neck Cancer Lumpectomy Neck dissection Patient Stories Radiation Therapy Surgery Treatments

Survivorship and Song: John Rediscovers Joy After a Rare Salivary Gland Cancer

John C. carcinoma ex pleomorphic adenoma

Survivorship and Song: John Rediscovers Joy After a Rare Salivary Gland Cancer

On most days, John thinks of himself first as a professional opera singer. He is a man who measures time in rehearsals, warm-ups, and the joy of the musical world he lives in. So when a small bump near his jaw appeared during a season of renewed health, it barely registered as a concern. No one, including his doctor, was envisioning a rare salivary gland cancer. His doctor scheduled a surgery and routine biopsy to clear it up. But a few days after the procedure, John’s world shifted when he heard the news he never imagined would follow something so ordinary. “It’s cancerous.”

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez & Jeff Forslund

That moment touched off an unexpected and disorienting period. John, who had survived a heart attack and prided himself on resilience, suddenly found himself in the world of rare cancers. More testing and consultation with a specialized care team confirmed the diagnosis: salivary gland cancer (carcinoma ex pleomorphic adenoma), a type of head and neck cancer where cells in a long-standing benign tumor convert to cancer. The surgical team’s quick response led to neck surgery to detect if lymph nodes were cancerous, with the fortunate news that the cancer hadn’t reached his lymph nodes. “They wanted to act fast because it’s a high-density cancer, which can sometimes metastasize and be difficult to treat,” John recalls.

John C. carcinoma ex pleomorphic adenoma

Radiation treatment was intense, requiring 33 daily sessions. The realities of daily therapy, loss of taste and smell, and the psychological barriers of eating purely for survival changed John’s daily habits and challenged his sense of well-being. Still, his career as an opera singer and choral performer went uninterrupted, a testament to John’s determination and vocal discipline.

Throughout his salivary gland cancer experience, John leaned heavily on his boyfriend, friends, and his wider musical community. He highlights Gilda’s Club and other support organizations as critical for emotional and practical help, especially for men. More than anything, John’s story emphasizes honoring support, resilience, and the importance of living as a “survivor of life, not just cancer.” He reminds all patients: “Cancer is cancer, no matter the type or how ‘mild’ it may seem. Surviving is surviving.”

Watch John’s video and browse his edited interview transcript below for more about how:

  • Advocacy and specialized care are vital for rare cancers like salivary gland cancer, making it vital to seek multiple opinions
  • Support systems, both personal (family, friends, partners) and professional (support groups), make a profound difference
  • Every type of cancer is significant; “easy cancer” or “mild cancer” is a dangerous myth
  • Maintaining identity and routine during cancer treatment can aid emotional healing and mental well-being
  • John transformed from initial shock to embracing survivorship and planning a life of early retirement, travel, and continued musical achievement
  • Name: John C.
  • Diagnosis:
    • Salivary Gland Cancer (Carcinoma Ex Pleomorphic Adenoma)
  • Age at Diagnosis:
    • 61
  • Symptoms:
    • Rapid weight loss
    • Small lump under ear that became more pronounced and grew larger
  • Treatments:
    • Surgery: lumpectomy
    • Radiation therapy
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of John’s Interview
  1. My name is John
  2. The subtle lump under my jaw
  3. How we confirmed my salivary gland cancer [carcinoma ex pleomorphic adenoma] diagnosis
  4. How my diagnosis impacted me
  5. My treatment plan
  6. My radiation therapy regimen and side effects
  7. I rang the radiation bell
  8. The hardest part: loss of taste and smell
  9. I have a strong support system: my friends, community, and partner
  10. No evidence of disease: scan results and confidence
  11. What I want others to know

My name is John

I was diagnosed in June 2025 with a rare cancer called carcinoma ex pleomorphic adenoma.

What I do for a living is where I find my joy. I am an opera singer, so anything voice-related brings me a lot of joy and passion. I have a social media presence where I talk about opera. I go to work and sing opera, come home, listen to opera, and talk about opera. 

It’s what I do, I’m the opera man.

The subtle lump under my jaw

I didn’t initially know anything was off. I had a little lump under my neck for a couple of years. When I had a cold, I could feel it get a little bigger, but then it would shrink. It was about the size of a pea. 

Over the last year and a half, that little pea became a bit bigger and more pronounced. I had also lost 50 or 60 pounds on purpose over a couple of years, so my face shrank and the bump became more pronounced.

I found an ENT and went to the doctor. He biopsied it, saying, “It’s probably benign.” The biopsy showed it was a benign tumor, but that it should come out because sometimes they later cause problems. We scheduled surgery to remove it. 

Three days later, he called to tell me it was cancerous.

How we confirmed my salivary gland cancer [carcinoma ex pleomorphic adenoma] diagnosis

The cancer was rare because this type, carcinoma ex pleomorphic adenoma, happens when a benign tumor’s cells convert to cancer. That’s the nature of this cancer: the conversion happens after benign removal.

At first, we didn’t know exactly what kind of cancer it was. More testing was needed to make a clear diagnosis.

My ENT recommended I see a cancer ENT doctor who specializes in head and neck cancer. We did a CT scan and a PET scan and waited for the tumor board to review my case. The board meets every Monday to discuss cases and choose the best procedures. 

They decided the best course was a neck dissection to remove as many lymph nodes as possible and determine if the cancer had spread.

A few weeks later, I had the neck dissection. The doctor said there was no cancer in any of the lymph nodes they removed. That meant subsequent radiation could focus on one localized spot instead of a wide field.

The surgery was successful. There was no pain, just a small scar. Healing took a week or two.

They wanted to act fast because it’s a high-density cancer, which can sometimes metastasize and be difficult to treat.

How my diagnosis impacted me

I was shocked. I absolutely was not expecting it. 

I remember I was on the phone in my room, and the doctor was talking to me, and all of a sudden I couldn’t hear him anymore. I was just lost in the word “cancer.” 

My family is large, but the only person who ever went through any kind of cancer diagnosis was my grandfather, who had pancreatic cancer when I was seven. Up until then, my family had dealt with heart issues, cholesterol, diabetes… conditions I’m familiar with. 

Fourteen years ago, I had a heart attack, and that set me on a healthy trajectory. Cancer wasn’t really on my radar.

My treatment plan

By July or early August, my doctor said the course was to start radiation once I’d healed from the neck dissection. He said head and neck cancers generally aren’t treated with chemotherapy, and thankfully, I didn’t need chemotherapy, just radiation. 

The challenge was timing. My contract year at the opera starts in August, right when rehearsals and preparations for opening night begin. I sing at the opera house, a church, and a synagogue, which are busy during High Holy Days. I had to consider how radiation would affect my voice, energy, ability to work, and whether I should just go on disability. But I wanted to start as soon as possible and get treatment out of the way.

He told me I’d need 33 sessions over about six and a half weeks, Monday through Friday. 

After a short vacation in mid-August, I returned and started radiation immediately, continuing through late September.

My radiation therapy regimen and side effects

For the first week or two, I felt almost nothing; my mouth was just a little dry. 

The first symptom was tooth sensitivity on the treated side, making brushing difficult. Then, mouth sores developed, making eating and swallowing painful. That side of my face became very red and swollen. My ear turned bright red, with sores inside it. I still feel a sound back there, waiting for it to heal.

The most profound effect was losing taste and smell. By the third week, food tasted like metal or chemicals, and then I completely lost both senses. Even now, they haven’t returned.

Thankfully, radiation did not affect my ability to sing. I fulfilled all my contracts at the opera house, synagogue, and church through the holidays. Some days were tough thanks to fatigue, throat pain, and body aches, but my workplace was supportive and never pressured me to come in.

Radiation became my daily routine. Treatments were at 9:30 a.m. I walked the dog, drank coffee (which tasted like nothing), biked or drove to the hospital, then did my treatment; just six or seven minutes. I’d return and start my day.

Once, I got the stomach flu for nine days and missed one day, but even when busy with temple singing for Yom Kippur, I arranged treatment around my schedule to avoid missing a session.

I rang the radiation bell

During radiation, you wait with others having treatment and develop relationships. I saw others ring the bell and say goodbye; I looked forward to my turn.

Last week was my final treatment, and I rang the bell.

The hardest part: loss of taste and smell

The loss of taste has been the most difficult part. During COVID, I lost my ability to taste for a week and thought I’d lose my mind. Now, unable to eat normally, it changes everything psychologically. I eat bananas and plain bread daily; food is flavorless or tastes bad, with a metallic or “vacant warehouse” chemical kind of taste.

It has been difficult, but life has thrown me challenges before, like a heart attack, losing a partner, and a severe leg injury. Each challenge showed me my resilience and helped me change my mindset to focus on positivity and what brings joy. 

Remembering my resilience gives me confidence that I’ll get through this, too.

I have a strong support system: my friends, community, and partner

I have an incredible support network. Dozens of friends are around to help, including through a meal train (despite my loss of taste), people praying, and offering to help. 

My boyfriend has been by my side every day, always asking how to help and making sure I get nutrient-dense food. My biggest strength is having him there for me. 

I don’t know how people do this alone.

No evidence of disease: scan results and confidence

Hearing “no evidence of disease” felt incredible. I worried about spread, but the PET scan and neck dissection showed no cancer in the lymph nodes. This gave me confidence moving forward. I knew what I was dealing with and could focus on healing and ringing that radiation bell.

Now, I’ll see my ENT for follow-up in a couple of weeks, with scans and exams every three months for the first year, then every six months.

What I want others to know

When I was diagnosed, I read extensively and found out I wouldn’t need chemotherapy, and the cancer hadn’t spread. I thought I had an “easy cancer,” but that mindset diminishes the disease. Cancer is cancer, no matter the type or how “mild” it may seem. Surviving is surviving.

Nutrition during radiation is different. I eat healthy generally, but during treatment, you eat for medicine, not pleasure. When taste is gone, I eat for healing: protein drinks, soft and bland foods, and whatever my body can tolerate.

With each challenge, I ask what I’ve learned and how to look forward, not back. This experience motivates me to live a healthy lifestyle and plan for an early retirement, to enjoy life while still healthy. 

Survivorship means continuing the life I’ve built and shaping my future; travel, new environments, and embracing change. I want to live as a survivor of life, not just cancer.

Being intimate and addressing changes in libido are part of healing, too. Finding someone understanding to talk to is crucial for physical and mental health. Gilda’s Club in Chicago is a great resource, providing emotional, physical, and financial support, nutrition and relationship classes, and more. Men and anyone with cancer should find organizations offering emotional and social support.

John C. carcinoma ex pleomorphic adenoma
Thank you for sharing your story, John!

Inspired by John's story?

Share your story, too!

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Categories
Chemotherapy Clinical Trials Debulking Desmoplastic Small Round Cell Tumor (DSRCT) Patient Stories Radiation Therapy Radioimmunotherapy Rare Surgery Treatments

“Hope Always” — Hunter’s Inspiring Rare Desmoplastic Small Round Cell Tumors Story

Hunter D. desmoplastic small round cell tumors

“Hope Always” — Hunter’s Inspiring Rare Desmoplastic Small Round Cell Tumors Story

When he was 21, Hunter balanced the roles of a full-time 911 dispatcher, a son and friend, and a gamer. But he was about to experience a rare and intimidating diagnosis, desmoplastic small round cell tumors (DSRCT).

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

When symptoms first appeared in late 2023, including sharp abdominal pain, nausea, and vomiting, Hunter initially brushed them off. But within days, an ER visit revealed abdominal and pelvic masses. That led to a biopsy at the University of Kansas Cancer Center, where he finally heard the frightening and alien words “desmoplastic small round cell tumors.” The internet offered its usual blunt statistics, but instead of letting fear take over, he chose to focus on the possibilities of treatment and the hope that lies beyond numbers.

Hunter D. DSRCT

Throughout the experience, identity became an anchor. Being a dispatcher and caring for others had always been central to Hunter’s life. Transitioning from caregiver to patient was jarring, but it also opened a new perspective. Now, he sees the subtle emotional weight that patients carry; it’s something that goes far beyond medical charts. That awareness doesn’t erase the difficulty, but it deepens empathy for others.

Hunter’s treatment path for this rare cancer was intense: multiple surgeries, rigorous chemotherapy cycles, a clinical trial in New York, and both traditional and radioimmunotherapy radiation. Every phase came with its own hurdles, from relentless nausea and hair loss to the emotional strain of living life in hospital rhythms. He leaned on surprising comforts, including peppermints that successfully warded off nausea, and the unwavering support of family, friends, colleagues, and a community that consistently stepped up.

Survivorship, for Hunter, isn’t just about returning to “normal.” It’s about discovering purpose. Feeling supported inspired a commitment to give support in return. Online DSRCT groups offered connection and a simple but powerful phrase: “Hope always.” That reminder became a guiding principle on days when his energy was low or uncertainty high. Hope wasn’t at all passive; it was active, a choice to find positivity even within the hardest moments.

Self-advocacy also emerged as essential. Hunter’s experience navigating referrals, accessing clinical trials, and learning to speak up within the healthcare system reinforced one vital truth: patients deserve to be heard. He encourages others to share their stories, ask questions, and build visibility around rare cancers like desmoplastic small round cell tumors. Open conversations create stronger communities and remind those going through it that they are not alone.

Watch Hunter’s video and read the interview transcript below. You’ll see how:

  • A dispatcher’s life flipped from caregiver to rare cancer patient overnight
  • Peppermints became Hunter’s secret weapon against relentless chemo nausea
  • A clinical trial in New York offered new hope
  • “Hope always” became Hunter’s guiding mantra through fear and fatigue
  • Hunter now champions survivorship and the power of patient voices
  • Name: Hunter D.
  • Age at Diagnosis:
    • 21
  • Diagnosis:
    • Desmoplastic Small Round Cell Tumors (DSRCT)
  • Symptoms:
    • Abdominal pain
    • Nausea
    • Vomiting
    • Fatigue
  • Treatments:
    • Surgeries: debulking surgeries
    • Chemotherapy
    • Radiation therapy: radioimmunotherapy, under a clinical trial
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Hunter’s Interview
  1. My name is Hunter
  2. My symptoms came on suddenly
  3. The moment everything changed
  4. My treatment plan
  5. I took part in a clinical trial
  6. The plan moving forward
  7. The side effects I experienced during treatment
  8. The biggest challenge I faced
  9. What survivorship means to me
  10. What I want others to know

My name is Hunter

I’m 23 years old. I was diagnosed with desmoplastic small round cell tumor, or DSRCT.

My hobbies mainly consist of playing video games with friends and spending as much time as possible with family and friends. I work a lot, but I do love my job.

I work as a full-time 911 dispatcher and currently serve as a supervisor. I’ve been a dispatcher for the last five years. I grew up in emergency services with both my parents doing it.

It’s definitely been an interesting transition, going from a caregiver side to the patient side of things. You know, I’m used to seeing and talking to patients every day as part of my job and hearing what they have to go through, but going through it myself has given me a whole new perspective — seeing how it is to be a patient, and living through some of their daily struggles.

I got diagnosed when I was 21. I’m sure everybody can think of what every 21-year-old would rather be doing than fighting cancer. But I’ve tried not to really look at it as getting robbed of my early 20s. I’d rather see it as having been taught how to live a better life, so that I can live the rest of my life the best way that I can.

My symptoms came on suddenly

It really only took one or two days of not feeling right to finally decide to go to the emergency room and get checked out. And it all really started around November 2023.

We had just come back from a festival a couple of towns over. The next day, I started feeling some pretty sharp abdominal pains, which wasn’t normal, but I just thought it was a stomach bug and I could sleep it off, and it wouldn’t be anything. But the next day, the pains got worse, and I started to have nausea and was vomiting as well. And as that worsened and went on through the day, I ultimately decided that night that it was time to go to the ER and get checked out. And during that visit, we discovered that I had a rather large mass growing in my abdomen and a smaller mass in my pelvis.

The people at the ER didn’t have an exact answer for what they were looking at because they weren’t sure at the time. So we were referred to the University of Kansas, or KU Cancer Center, for a biopsy and further diagnosis. And we actually had to self-refer ourselves because there were no local hospitals taking incoming patients at the time. So we had to take steps outside of the emergency room to take the next step in my treatment plan. 

The moment everything changed

We visited the doctors at KU and got a biopsy scheduled. And from that point, we were trying to put the next steps in place. It wasn’t until we got the biopsy done and I had a port placed in my left shoulder that we found out that I actually had a desmoplastic small round cell tumor, a rare type of cancer. And then I was referred to the specialist that they have at KU.

Getting my diagnosis — there are actually two parts to that story. The first had to do with the initial findings in the ER when they had to come in and break the news that I had my tumor. My mom, who has been a nurse for years and years and has seen everything, was a little bit of an emotional wreck. And my knee-jerk reaction in that situation was to try and make things funny. So I was trying to make jokes out of the situation. While it was a rather serious topic at the time, I was doing my best to make light of the situation and keep a positive outlook. 

The second part came two weeks later, a week after my biopsy, when we received the official results. I was with my best friend at the time, and we were in my basement when I got the call from my doctor. And we rushed up to my mom to see what the news was, because at this point, we were thinking it was a more controllable cancer, such as a testicular cancer or a lymphoma. But I was told that I had what’s called a desmoplastic small round cell tumor and that I have an Ewing sarcoma genetic trait to it as well. So it was a little difficult finding out that I had such a rare disease. And of course, we didn’t know anything about it at that point. We had never heard of it before; most people haven’t.

The more that we were researching this, the more worrisome it became, because Google will be pretty straightforward and will give you some sad statistics, but luckily, that doesn’t seem to be the case with most cases these days.

My treatment plan

We knew pretty early on that no matter what it was, we were going to be hitting it pretty hard with chemo. So I had a port placed within about a week of getting out of the ER, just as a precaution, in case we needed it. And it turns out that we did end up needing it. 

It wasn’t long after my diagnosis that my doctor at KU was on the phone with me, talking about the treatment cycles that I was going to be on. He didn’t give me a lot of options, but that’s just because there weren’t a lot of options to effectively fight this. So I was put on a pretty rigorous chemo cycle that did quite a bit of damage for a while, but I had switched around between a few different treatments and been in and out of the hospital for transfusions and IV antibiotics. I’d been admitted a multitude of times due to complications with chemo alone. And you know, I was putting my body through all of that, but I just had to keep thinking to myself during that time that there was an end to it and that there was a reason I was doing all of it.

So the overall treatment plan was to hit it early with chemo to hopefully shrink any tumors, and after that, to go in and remove those tumors surgically. And once those tumors were surgically removed and they could no longer see or detect any disease or scans, they were planning to going to do a whole abdominal radiation therapy as well as a clinical trial. And over the years, all of those treatments just added up and got me to where I am today.

But yeah, three different surgeries. The radio immunotherapy trial, a month of standard radiation or traditional radiation, and then chemo on top of all of that, and then finishing it off with maintenance chemo.

I took part in a clinical trial

The doctors say the most effective treatment plan for desmoplastic small round cell tumor is to hit it early on with surgery, followed by traditional radiation treatment. The main kind of surgery for this type of cancer is called a debulking surgery. And to my understanding, that’s where they go in and try and remove any physical mass that they had seen on scans that they can physically get hold of. And once those are removed, they try and target that area with a traditional type of radiation to kill any residual cells that were left over. And there are also many other trials offered for this type of cancer that patients have access to.

I may not remember everything, but to the best of my memory, the clinical trial that I took part in was a radioimmunotherapy trial offered by Dr. Slotkin’s team at Memorial Sloan-Kettering in New York City. Simply put, they surgically removed the masses from my abdomen and put a radioimmunotherapy fluid into my abdominal cavity to sit there and absorb over a few days. And that would hopefully mark the targeted cells for radiation to be killed later on during the traditional radiation process. So with the clinical trial, I also had my third and final exploratory surgery, where they went in and cleaned up any scar tissue or anything else left behind, and made sure I didn’t have anything else growing. 

After the clinical trial, they followed up with a month of traditional radiation. So we were living out of the Ronald McDonald House in New York for about a month straight while I received radiation treatment.

The plan moving forward

My maintenance chemo was scheduled for about a year. We started around January of 2025, and I’ll hopefully be wrapping up around January 2026. I don’t know exactly how many treatments I’ve had, but I’ve had them pretty consistently every three weeks. So once or twice a month, I’ll go in for a week of chemo and then have two weeks off. So the cycles are definitely up there. I’ve stopped keeping track after so long, but hopefully I’ll be wrapping up soon.

We’re planning a final trip out at the first of the year, hopefully a remission trip, and ring the bell out there and have my remission start in New York, where my big medical journey started.

The side effects I experienced during treatment

The most significant side effects that I first experienced when starting chemo and having my other treatments were the nausea and vomiting. They were relentless. There wasn’t really anything I could do to stop them. There was no medication I could take. Nothing would help. Food smelled different. Food tasted different. The only thing that helped get my nausea under control was peppermints. Because peppermint oil is supposed to naturally help soothe the stomach and treat nausea. So everybody would chip in and help buy me peppermints whenever I was doing my chemo weeks because they knew that was the only thing that really helped keep me from getting sick.

I also experienced hair loss. Luckily, I’m growing my hair back now, but my first chemo was pretty quick to take the hair out of my head whenever I started it. I was rocking the bald look for a while. But I feel like I look a lot better with hair. Luckily, I’m able to grow some hair now that I’m on my maintenance chemo.

The biggest challenge I faced

My biggest challenge is probably trying to feel normal after getting through it all again, because I’ve spent so long in and out of the hospital, in and out of doctors’ appointments, getting tested. People are constantly asking how I’m doing. And that’s something I constantly have to be aware of — how am I doing, really? I actively have to be watching everything that’s going on with my body and paying attention to everything that my body’s telling me. 

But I’ve learned to stop worrying about things so much, to take everything day by day, and not necessarily be so anxious about every little thing that’s going on. I’m getting back to the normal side of life.

So early on, it was made very clear to me that I wasn’t going to have any problems finding support in my community. People really stepped up. They took time to make sure that I was doing okay during my treatment weeks and to check on me and make sure I and my family had everything we needed. I was also very lucky that my friends were able to support me through it. I wouldn’t have been able to get through it all if it weren’t for how well my employer treated me during all of it, too. They allowed me to keep my job while I was sick and kept my seat warm for me for whenever I was ready to come back.

What survivorship means to me

For me, survivorship means finding a higher purpose. Something that I’m more meant to do. For me, that’s helping others. I’ve found a lot of comfort in doing that. Well, it’s something that I already found comfort in doing before I got sick. But my experience has really resolidified that. Survivorship for me means advocating for others, moving on, not staying silent, and finding a voice. Not only for myself, but for others who are going through things like this. Because it’s not always easy to find yourself while you’re going through it.

I’m actually in a couple of online support groups for DSRCT. And one of the things that they say is, “Hope always.” And that was something I had never really heard until I started interacting with that group of people. But “hope always” has now come to mean to me that no matter how grim things look, all you can really do at the end of the day is hope. Because if you don’t, who will? Somebody’s got to have a little bit of hope in such a situation. I’ve had my hopeless days, but I’ve never let hopelessness consume me. I’ve always tried to try and take away at least one positive out of any bad situation, to kind of give myself a different perspective.

What I want others to know

One message that I definitely want people to take away is how important it is to find your voice and be heard. Because I don’t think anybody should go through this silently. They should absolutely fight cancer; they should be kicking and screaming. Since that’s how cancer tries to take you down, that’s how you should try and take cancer down, too. 

I think finding a voice and being able to tell your story as a survivor and a patient is important not only to help give hope to others but also to be visible to other people, as someone who’s gone through it and someone who understands what other people are going through. I just want a stronger community. 

I don’t want it to be such a hard thing for people to talk about. I want people to be able to talk about it more openly. Because when we talk about it openly, we can start tackling it. I feel like a lot of the problems don’t get talked about enough. 

Patient advocacy is one thing that’s really important for me. After having gone through our own struggles with the American healthcare system, I am definitely a strong believer in finding your voice and self-advocating for yourself as a patient. Because if you don’t, who will?

Hunter D. DSRCT
Thank you for sharing your story, Hunter!

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Categories
Chemotherapy Immunotherapy Kidney Patient Stories Radiation Therapy Renal Cell Carcinoma Treatments

A Life Defined by Strength, Hope, and Community: Mia Hamant’s Stage 4 Kidney Cancer Story

In Loving Memory: Mia Hamant 2004-2025
In Loving Memory: Mia Hamant 2004-2025

A Life Defined by Strength, Hope, and Community: Mia Hamant’s Stage 4 Kidney Cancer Story

In memory of Mia Hamant, who passed away after battling stage 4 kidney cancer at age 21.

This interview with Mia Hamant was recorded on October 15, 2025, just three weeks before her passing. When we spoke, Mia was full of determination and hope. She wanted to share her experience to help others understand what it means to face a rare and aggressive cancer at such a young age.

In Loving Memory of Mia
(2004-2025)

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez & Jeff Forslund

Mia was a goalkeeper for the University of Washington women’s soccer team, a psychology major, a loyal friend, loving daughter, and a fighter who approached every challenge with courage and grace. As Mia’s disease progressed, she was planning for her next steps including rebuilding her strength and pursuing clinical trials.

We release this video in her memory, with deep gratitude to Mia and her family for allowing her story to be shared. We hope you’ll listen to her words as she meant them. Her message is one of honesty, strength, and love for life, even in the hardest moments.

A goalkeeper for the University of Washington, Mia described symptoms that first masked as stress and travel-related illness, until scans and pathology uncovered a rare, aggressive kind of kidney cancer, associated with a mutation in the SMARCB1 gene, that demanded urgent action. She made a personal choice to limit some of the cancer details she wanted to be told. Maintaining uncertainty, she says, preserved hope and kept her focused on the next step.

Join Us in Honoring Mia: Share Your Thoughts and Encouragement on YouTube

Mia H. kidney cancer

Treatment started immediately with inpatient chemotherapy. Over time, her plan included cycles of chemo, spot radiation for pain (including back radiation to relieve leg pain), and a trial of immunotherapy that worsened the disease; something Mia framed as the treatment’s effect and the cancer’s response. Side effects such as nausea, pain flares, and chemo‑induced enteritis requiring hospitalization shaped her daily life. Hair loss was more manageable emotionally, eased by support from family, friends, and her boyfriend.

What helped Mia most was community. The UW Women’s Soccer program, coaches, classmates, and even a local coffee stand rallied around her. They posted signs, organized and contributed to fundraisers, and insisted that she remained part of the team. This close community kept her feeling grounded. She centered herself with routine to help her feel normal. She celebrated her birthday and asked friends to share everyday “drama.”

She continued school online and was aiming to graduate this coming year. With placing her dream of joining the National Women’s Soccer League (NWSL) on hold, she was focused on rebuilding her body and had pursued a second‑opinion visit at MD Anderson to explore clinical trials for her rare cancer. The lesson she carries forward is to follow one’s own process with the care team, because each experience with cancer is deeply personal, and the right path is the one that fits the person, not the statistics.

Watch Mia’s video and read through the transcript of her interview below. You’ll learn more about:

  • The importance of following your own process: decide how much information you want and communicate that clearly to your care team
  • How treatment paths can shift; if a therapy worsens a disease like kidney cancer or side effects are overwhelming, teams can adjust plans
  • How community matters: teammates, friends, family, and local supporters can make daily life and treatment feel more manageable
  • Transformation: You’ll see how Mia moved from shock and uncertainty to agency, advocating for timelines, exploring second opinions, and redefining “normal”
  • There is no one “right” way to navigate a cancer experience; the best approach is the one aligned with your values and needs
  • Name: Mia H.
  • Age at Diagnosis:
    • 21
  • Diagnosis:
    • Kidney Cancer (SMARCB1-Deficient Renal Cell Carcinoma, Non-Sickle Cell Trait)
  • Staging:
    • Stage 4
  • Mutation:
    • SMARCB1
  • Symptoms:
    • Bad cough
    • Fatigue
    • Nausea
  • Treatments:
    • Chemotherapy
    • Radiation
    • Immunotherapy
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Mia’s Interview
  1. My name is Mia
  2. My soccer career and athletic background
  3. The first signs that something wasn't right
  4. My path to my kidney cancer diagnosis
  5. Getting the official diagnosis
  6. Learning about my stage and prognosis
  7. Determining my treatment plan
  8. Getting a second opinion
  9. My treatment journey
  10. Managing side effects
  11. Dealing with hair loss
  12. My current treatment plan
  13. Managing my diagnosis while being young
  14. Balancing school and treatment
  15. Finding support during treatment
  16. Finding normalcy as a 21-year-old
  17. What hope means to me moving forward
  18. What I feel I've been robbed of
  19. My message to others

Editor Note: This interview with Mia Hamant was recorded on October 15, 2025, just three weeks before her passing.

My name is Mia

I have stage four kidney cancer, specifically SMARCB1-deficient renal cell carcinoma. I got diagnosed in 2025.

I am a senior now at the University of Washington. I have been on the women’s soccer team for all four years. In my first year, I tore my ACL, so I redshirted. But aside from that, it’s been pretty smooth sailing, except for this cancer diagnosis, of course. 

I’m a psychology major, and I want to be a therapist after college.

My soccer career and athletic background

I’m a goalkeeper, which a lot of people think is the craziest thing ever. But I really love it. I started playing when I was around three years old, just doing little camps and whatnot, just getting touches on the ball. I also played basketball, softball, and volleyball growing up, which all helped me become the soccer player I am today.

I started with a 50% scholarship, and then I increased my scholarship. After playing last year and performing well, my coach upped my scholarship to a full ride.

The first signs that something wasn’t right

Things didn’t feel right for a pretty long time, honestly. I started feeling a little ill at the end of last year, so I would say at around November or so, things started heading downhill, but that was during soccer season. So I chalked it up to stress, because we were traveling so much around the country, and there was just a lot going on. 

But the first symptom I realized I had was intense lethargy. So I was super tired, and my workouts just weren’t doing well. Usually, I could pump myself up, get myself going. But it wasn’t like that at all. So I was pretty tired. And then my breathing started getting pretty bad. So I was really short of breath. I am short of breath right now, too, because there’s fluid getting in my lungs and whatnot.

At the end of March, we were on a team trip in Spain, which was super cool, a great experience. But I got really sick during that trip, and I was throwing up and stuff. And I was thinking, “This is not normal. This doesn’t feel right.” But I also thought it was due to the food, or the travel, or something. 

I got back to the States at the beginning of April, and then that’s when I went to the ER for the first time because of shortness of breath in the morning. And then I was told that it could be one of three things: an autoimmune disease, an infection, or cancer. So that’s when I discovered that I could have cancer. And then a few days later, I was diagnosed.

My path to my kidney cancer diagnosis

I had every single scan in the book. I was just there with so many different doctors just coming in and out. I was just a medical anomaly. 

I finally got admitted to the hospital after they ran a biopsy, which confirmed the diagnosis. They drained my lungs and got some samples from that, and also did a liver biopsy. This allowed them to diagnose me on April 11th when I was admitted to the hospital.

I honestly can’t even remember what happened at this point. There was just so much going on in that short time span. I think they just wanted to double-check and really get that biopsy going to make sure we knew the right diagnosis.

I think they were just seeing a bunch of lesions everywhere, all over my body, because I got diagnosed pretty late, so it was stage 4. So there’s just a bunch of lesions all over my body. And I’m pretty sure that’s what made them decide.

Getting the official diagnosis

We laugh about this now, but when I found out, I was alone. My mom was in the hospital with me, but she was taking a work phone call, and I wanted to figure out what my diagnosis was on my own. But the doctor came in, and I feel so bad for this guy. He has a daughter my age. And he had to break the news to me, and I just started bawling my eyes out. And then my mom comes in and goes, “Why would you tell her without me?” It was a whole scene. It wasn’t a huge deal, but it was just funny to look back at. We joke about it now. 

I just remember I was so shocked. I just had no idea what that diagnosis came with. So I was just out of it for a while. But eventually I got my bearings, and I really just put my mind to it and thought, “Okay, this is actually happening.” But for the first part, I was super out of it and just bawling my eyes out.

I’ve got no family history of cancer at all. I’m missing a certain gene that allows me to fight this cancer.

Learning about my stage and prognosis

I actually didn’t know for the longest time that I was at stage 4, because I didn’t want to know any details about it, even how long I have to live or whatever. I hate knowing those details. So I actually kept it under wraps for a while, and I found out through my GoFundMe page once it was posted that I had stage 4 cancer. 

It is an ignorance-is-bliss type of situation, and I really appreciate the way that the doctors and I went about it, because I think it made my process a lot easier and more manageable for me to comprehend.

Determining my treatment plan

Honestly, that was a blur, too. But I think we immediately decided to start chemo because of the state of my body. It was hard for me to breathe, hard for me to move, to do all these things. So we immediately decided to start treatment no matter what. 

I wanted to get some cold caps and stuff for hair loss, but there was just no time for that. There’s a bunch of other things with fertility and stuff that I was hoping to get done, but I couldn’t wait any longer for that either. So it was a whirlwind. 

I did end up getting my first treatment of chemo in the hospital when I was admitted. So the doctors did a really good job of just getting that started and getting the ball rolling. There are definitely other ways I feel I could have gone about it, but timing-wise, it was very difficult.

Getting a second opinion

We did not initially get one, I just went with the original recommendation. We did get a second opinion recently in Houston, Texas, at MD Anderson. After that visit, I found there are clinical trials I could possibly join. My disease is rare, so we want to look at all options.

My treatment journey

I’ve done a bunch of treatments so far. 

I started with chemo. I did three rounds of chemo. My schedule, my regimen, is every three weeks. I go in once every week, and then I have the fourth week off. So it’s a four-week cycle. I think I did that 2 or 3 times. 

We tried to get off of chemo to try immunotherapy, but that didn’t work for me at all. My body did not respond to that very well, and I started getting pain flare-ups and all this other stuff. The immunotherapy actually made my cancer worse. That was a little bit of a setback. So we went back to chemo. 

I’ve also been doing radiation to treat spot areas for pain, on my back, to help with pain in my legs. And what I’ve learned is that everything’s connected in your body, obviously.I had my first radiation session around the 5th of July. And then I’ve gotten radiation three times total. That was the first time, and then two times recently. But I’m still just doing chemo. I did take a little break, but now we’re back up to the cycle again.

Managing side effects

I’ve had tons of side effects, especially right now. I can’t even list them all. 

Nausea is a big one. It makes it really hard for me to eat. What I recommend for that one is just whatever sounds good, just get it and eat it. That’s all I’ve been doing recently. DoorDash has been my best friend. 

Then I’ve had pain flare-ups. I had a really bad one last night that comes along with radiation, which is super unfortunate because you can’t really do anything about it. My left leg was just in so much pain last night, and I just had to tough it out. 

I had to be hospitalized for chemo-induced enteritis, which is inflammation of the small intestine. So I was just in so much pain that I had to get an ambulance. It was crazy.

Dealing with hair loss

When I first shaved my head, I was totally fine. I actually had to shave my head the other day again, because hair was falling out again because of chemo. But when I first shaved it, my family, one of my best friends, and my boyfriend were there with me. So it made it very easy to just get in the flow and just have fun with it, which I really appreciated because that could be a very emotional process. 

But for me, I thought it was just a sign, just taking the next step now. “Now I’m a real cancer patient.” That’s literally how I felt. 

Honestly, hair loss hasn’t really bothered me at all. I was told I have a good head shape, so that also helps. But yeah, it’s not really a big deal for me.

My current treatment plan

Well, we’re stopping radiation now because I just did another cycle. So last week was really tough because I did radiation and chemo, which I haven’t done before, combined therapies. So that was really, really tough on my body. And just the eating was very difficult, and the nausea was really awful. But now we’re just doing chemo from now on.

As I mentioned, I went to MD Anderson, and they have clinical trials that I could potentially try. I’m not sure about the exact details, but we’re working on those, especially since my disease is so rare that we really want to see all the options we possibly can.

Managing my diagnosis while being young

Definitely taking a break from soccer. I still try to make all the events. I try to make every single soccer game that I can for U-Dub because I want to be there for my team, and because my team’s always here for me. 

That’s the saddest part, honestly, not being able to play with my best friends. Last year, I would say was my breakout season. So I was able to get a lot of playing time then and just really prove to not only my coaches, but to myself and my teammates that I do have what it takes to play at that level. And I did want to go pro eventually, but that has been stopped. That has been put on hold. So yeah, it is weighing on me a little bit, but the fact that I’m still able to be such a part of the team has truly helped a lot. My team has done so much, my coaches have done so much to make me feel involved, so it really takes the burden off of that in that regard.

I think that’s honestly a blessing about being so young with this diagnosis, just being surrounded by that community, because in two years, I wouldn’t be able to be surrounded by my best friends, fighting this together, because we’d be all over America or something. 

Being this young and having that automatic group of best friends has been really, really helpful. And I live with my college friends too. So just seeing them daily, even if I’m not doing well, it’s just really nice to just have that outlet.

Balancing school and treatment

I’m doing fully online school. I tried to go in person for a little bit, but that did not work out very well. So yeah, we’re all online now.

Hopefully, I’ll graduate in the spring. I just have to take one statistics class in person that I’m really stressing about. But aside from that, yes, I am on track because we were able to do some classes before I got diagnosed. So I’m ahead of the curve, which is great.

Finding support during treatment

Just my normal resources. I see a therapist. I go to acupuncture, which is a lot more therapeutic than you would think, because my acupuncturist also dealt with cancer in her past. So that has been really helpful. 

Friends and family have been amazing. Nothing short of incredible. I pride myself on the community I surround myself with. Having that solid base already has really helped me propel through this diagnosis.

The drink that I was posting about is from a little coffee stand called Muddy Waters. I’ve just been going to them forever, but they actually put up posters for me and stuff without me even asking, which is super nice. It had my GoFundMe page linked and stuff, and I know the baristas by name; they’re the best. It was super sweet that they were able to do that for me.

I just want to give a shout-out to UW Athletics. Just for all the support they’ve shown me throughout this whole thing. Not just my team, but all the other sports teams. There are some sports teams, like softball, that are the first to wear the orange ribbons for me or post about me, or shout me out. So, just really appreciate all that Huskie athletics has done for me.

Finding normalcy as a 21-year-old

The most normal thing I’ve done recently was celebrate my 21st birthday, which was super fun, on July 30th. I was able to go out and have my first drink and everything, so that was really great. I went out with my friends and family, which is not every 21-year-old’s dream, but I really enjoyed it. 

I’d also say having my boyfriend just as a rock for me has been incredible. He treats me normally. Really cares and asks, “How do you want me to go about this?” Because they could baby you or they could act distant. But being able to be adaptive with him has been really great. And then my friends are just so amazing. They treat me normally as well. I just want to know the details. I want to know the drama. Don’t keep anything from me. Just treat me like a normal person. So that’s been the biggest thing. That’s been really great.

What hope means to me moving forward

I think that hope for me came from not knowing all the details of my diagnosis and whatnot, because it gives me hope that all the awful things on the internet aren’t real. Hope for me is just getting back to my normal life and living like a normal person. That’s all I could ask for, honestly. Just back to normal life. And I know life will never be normal again. But just having that hope that things will be normal again one day.

I have no plan as of now. Just trying to make sure my body heals. I really want to build my body back up. That’s a huge thing that I want to work on, because I’ve lost a lot of weight and a lot of muscle, and my body is something that has propelled me through the past four years of sports and school and everything. So that’s the number one priority for me. Along with my education. Not sure what the next steps for that is, but as I said, I want to be a therapist, so just wherever that takes me. Internships, other opportunities like that, just whatever I can get, honestly.

What I feel I’ve been robbed of

I feel I’ve been robbed of my whole soccer season. And just my body being at its peak. Every 21-year-old girl, this is your prime, almost. Your 20s are when you have the best physique, the best body. Hopefully. Ideally. So just not being the most confident in my skin has really sucked. So I feel I’ve been robbed in that way because my body is just fighting the cancer. It can’t do as much for me as it did before. So just not being able to work out has really sucked. And just not being able to move my body the way I want to has been a really hard part for me.

My message to others

I always say this. Follow your own process. As I said before, I did not want to know my diagnosis. But some people really want to know it, while others, like me, don’t. So just communicate with your medical team and figure out what is best for you, not what is best for everyone else. Because everyone copes differently, and it’s scary stuff. It’s not fun. So yeah, just follow the way that you want to go about things and just really stick up for yourself.

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Burt R. feature photo

Burt R., Pancreatic Neuroendocrine Tumor (pNET) & Kidney Cancer



Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
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